SOFT Times Newsletter, April 2014

Transcription

The
SOFT Times
Support Organization for Trisomy 18, 13 and Related Disorders
February/March/April 2014
The SOFT Board of Directors sends greetings for a
healthy and prosperous new year in 2014.
2014 SOFT Conference: July 9-13, Norfolk, Virginia
Persistence and determination alone are omnipotent.- Calvin Coolidge
SOFTLY SPOKEN
Kris Holladay, Founder
“I REMEMBER”
I was raised in a loving family with six
children. I am the fourth daughter of
five girls in a row and the youngest of
the six is my one and only brother. My
memories of Christmas mornings are
filled with happiness. With five daughters, I remember our family Christmas
tree would be piled high with lots of
“girly” stuff! One Christmas memory will
remain forever in my mind and heart! I
was eight years old and our family lived
in the small town of Holbrook, Arizona.
Under the Christmas tree were all sorts
of baby dolls for all the daughters and
they filled the room with the smell of
plastic equal only to a Firestone tire
showroom. I had asked Santa for a
“Chatty Cathy” doll. This amazing little
doll could “talk” by pulling a string that
came out from her back. You would
pull the string and as it retracted back
into the doll, you could hear words and
phrases, thus “Chatty Cathy” would
chat.
On this particular Christmas morning,
I went sleepy-eyed to the tree and with
delight, I found the long waited for
“talking doll”! With great excitement, I
lifted my “Chatty Cathy” up and embraced this very wanted doll. I knew I
would love this doll forever! I carefully
pulled the string and anxiously waited
to hear my special doll’s first “words”.
My parents and sisters watched and
listened in silence and excitement to
hear what Chatty Cathy had to say.
But, the sound that came from my little
doll was so jumbled and strange and
no words could be understood! It
sounded something like, “...irk ourk ...
Irk...ourk”
I pulled the string again and again
with the same results. I tried to fix my
doll, but Chatty Cathy could not chat!
With tears in my eyes, I took my doll
to my mom and told her Cathy was
broken and I didn’t want her any
longer. Mom took me and Chatty
Cathy in her arms and rocked us
both. Then, she stood me on my feet,
straightened my nightgown, and
handed my doll back to me and said,
“Someone needs to love this little doll
and I think you are just the one!” I
looked at my mom’s tender eyes and
then back down at my broken doll.
Somehow, my mom’s words touched
my heart and I started to feel something special for this little broken doll.
Funny, but I never noticed how
strange her voice sounded after that
or at least it didn’t bother me. Even
when school resumed and I took my
doll to school for show & tell, the
laughter from my classmates couldn’t
convince me
not to love my
little
doll!
How could I
have known
Kris & Kari Deann,
then how her
words would change my life forever!
Fourteen years later, Hal and I were
expecting the birth of our second child.
We were already the happy parents to
our darling red-headed two-year old,
Tricia. Waiting by her phone, was my
mom. As with all her newborn grandchildren, she would come and help the
young family. The call finally came and
while my mom was in-flight to Oakland,
California, Hal and I had were told the
unbelievable – our newborn daughter,
Kari, was born with a genetic disorder
(Continued on page 3)
Lewis Sisters Christmas, circa 1958
February/March/April 2014, The SOFT Times, Page 2
The work goes on, the cause endures, the hope still lives, and the dreams shall never die.-Edward Kennedy
“I REMEMBER”
(Continued from page 2)
known as Trisomy 18. The doctor went on to explain that with
this condition she would be severely physically and mentally
handicapped and would probably live only a few short weeks or
months. Mom arrived to find Hal and I devastated and our hearts
broken. When mom first saw this tiny newborn granddaughter,
she held her tenderly and whispered sweet words in her tiny ear.
Because the hospital staff stated there was “nothing they could
do that couldn’t be done at home,” Kari was sent home with us to
die!
Mom helped me write a list of all the things we wanted to share
with our newborn daughter. My list included things such as putting lotion on her tiny body, singing to her, tape-recording her
cry, putting a pink bow in her hair, etc. As I completed each one,
I would cross it off my list. Once my list was completed, everything else became bonus time and days.
The first few nights at home were filled with fear and anxiety!
My mom knew I was exhausted, so she took the “night shift”.
She courageously sent me to bed for a restless sleep while she
carefully watched over Kari. Throughout the night, mom would
bring Kari to me for her tube feedings and then I would go back
to bed. Just a day or so later, I recall feeling overwhelmed with
sadness by the thoughts of Kari’s death. I told mom I was scared
to truly love this baby girl! I was afraid that her life and death
would hurt too much and the pain would be too great to bear!
Just as in those many years before, my mom took me in her
arms and rocked me while I cried for the baby that would never
be! Then, she tenderly looked into my eyes and said, “Someone
needs to love and care for this little girl and I think you are just
the one!” From that moment on, I felt something special for our
Kris Holladay, Founder
darling daughter, Kari! I began to feel unconditional
love! Amazingly, Kari outlived all expectations placed
upon her and this incredible little girl lived happily and
lovingly
for
almost
11
years!
Sixteen years after Kari died, my mom passed from
this life to the next. I found myself trying to imagine my
mother and Kari seeing each other again. I like to think
I could hear Kari say, “Welcome home, grandma. I’ve
missed you so much!”
Lewis Sisters, circa 1960
SOFT Mission
Statement
SOFT is a network of families and
professionals dedicated to providing
support and understanding to
families involved in the issues and
decisions surrounding the diagnosis
and care in trisomy 18, 13 and other
related chromosomal disorders.
Support can be provided during
prenatal diagnosis, the child’s life
and after the child’s passing. SOFT
is committed to respect a family’s
personal decision and to the notion
of parent-professional relationships.
Lewis Sisters, circa 1961
All the art of living lies in a fine mingling of letting go and holding on. - Havelock Ellis
President’s Corner
Dear SOFT Families:
The holidays are over and we are
moving through the new year. There
are so many exciting things happening this year to look forward to. As we
approach Valentine’s day, there will
be the opportunity to share your
child’s photo. In the month of March
comes Trisomy awareness month.
There will be suggestions that we can
all participate in to help raise awareness in our community and our local
hospital. Make sure you go to the
website at www.trisomy.org as well
as to the SOFT facebook page to
follow what is happening in the month.
Do you have ideas of what we can do
to raise awareness? Let us know
your ideas. Do you want to share
information about SOFT? Go to the
website where you are able to print
the SOFT brochures. There will be
some fun things happening in the
month that we can all participate in.
Stay tuned and see what you may be
able to win!
Survey
Many of you participated in the survey that Stephanie Wallace is working
on. She had a great response from
all of you and was impressed with
how wonderful our community has
been to work with. She is working on
the data right now and then she will
finish her thesis project in March. She
is hoping to have a manuscript written
by Spring and will submit it for publication. Thanks to so many of you,
there will be a study that will raise
awareness of our children and experiences within our families. Thanks to
all who participated.
To help raise awareness make sure
you add your story to the family story
area on the SOFT website. Then you
can share your story with others during the month of March. Remember
you have to be a member of SOFT to
have your child’s story included. Just
fill in a registration form and you are a
member. The membership is free,
just sign yourself up. Don’t forget to
by Barb VanHerreweghe
also update us on surgeries your children have had. It is so important to
have them in the surgery database so
other families may be able to contact
you if their child also needs that surgery. You can update that information online. Don’t forget that even
though your membership is FREE, we
still need you to renew each year so
we have the updated information on
you and your family.
Conference 2014
Conference is quickly approaching.
July 9-13th are the dates you need to
put on your calendar. Did you know
you can make your reservation now
so you get a room in the saved room
block. Just call the Sheraton Waterside Hotel in Norfolk, VA. At 757-6226664. The SOFT rate is $115. You
can also go to the SOFT website and
the conference page and you can
then make your reservation there.
Don’t miss out on getting a room,
make your reservation now! June 7th
is when reservations cannot be made
for this cost, don’t wait register now.
The clinics fill up quickly, registration
opens on March 1st and will end the
beginning of June. Don’t forget that
you need to send your payment with
your registration or you are not registered.
The conference fee covers many
meals while you attend the conference. The conference fee does not
cover all the costs of the conference
and the committee always puts together a wish list to help cover the
costs of other items that will enhance
your stay. If you or someone you
know can help out with any of these
items please let us know. See the list
later in the newsletter.
Stacy Update
Stacy was just diagnosed with myoclonic seizure activity. She had 2
grand mal seizures 8 years apart but
this is new. She spent a night and
day in the hospital on the Epilepsy
unit to be monitored and videoed.
She had a day full of the movements
they were able to view. She has now
been put on Clonazepam beside her
Keppra to see if that will stop the activity. As always when it seems things
are going well she always gives us a
wake up call. We are hoping this will
work. She has been super happy and
until the seizure activity she has been
pretty healthy recently. This is the
worst time of year for our kids and
with the flu season upon us I pray that
each of our children had their shots
and will continue to have good health.
Nicholas Wright
I am sure most of you heard about
the loss of Nicholas Wright who had
full Trisomy 13. Nick has been with
us so many years it is hard to believe
that he is walking with the angels and
many of your children. Keep Mark
and Jane in your prayers and let them
know you care.
To all of you who have lost your children you have our deepest sympathy.
Know your family in SOFT cares for
you and yours. God Bless each of
you!
Newsletter
So this is the second addition of the
all electronic newsletter. Let us know
how you like it. Don’t forget that just
because your story is on the SOFT
website, doesn’t mean we wouldn’t
love a family update from you for the
newsletter. Please send your articles
to [email protected]
To each of you have a healthy new
year , stay tuned for the fun in March
for Trisomy Awareness and hope to
see everyone in Norfolk, Virginia in
July.
SOFTly,
The VanHerreweghes
Barb, Dave, Stacy (32 years old full
Trisomy 18) and Andy
When I let go of what I am, I become what I might be. When I let go of what I have, I receive what I need.
SOFT OF UTAH Chapter decorates a tree for
Salt Lake’s annual FESTIVAL OF TREES
HISTORY: For 43 years, the Festival
of Trees has been a “Gift of Love”
to children.
The Festival is organized by a volunteer board of 85 women who enlist
time and talents from thousands of
individuals, organizations, businesses,
and families throughout Utah and be-
yond. Over $33 million has been
raised for children at Primary Children’s Hospital through he Festival
since 1971, with $1,871,546.91
raised last year and over 2 million
was raised this year.
Perhaps the greatest phenomenon
of all is that everything is donated.
The trees are decorated and purchased by individuals, families, organizations, businesses, and church
groups. In addition, others generously
donate items to fill the shops. Businesses provide the paper and printing
of posters and tickets. Corporations
offer their covered trucks and drivers
to help deliver the trees, and so much
more! Thousands of people join efforts
by contributing countless hours and
means to give "A Gift of Love" to children in need.
Over the years, Festival of Trees has
been copied many times throughout
the United States and Canada. However, the Salt Lake City Festival of
Trees remains the "granddaddy" of
them all.
For the 15th year, Utah’s SOFT
Chapter has donated and decorated a
tree for this worthy cause. Most of you
who have attended a conference in
Salt Lake City know about Primary
Children’s Hospital – where our own
Dr. John Carey resides. We love doing
this every year and have such a great
time getting together for such a worthy
cause.
……………………………………………
….Submitted by Debbie Dye
(SOFT of UTAH Chapter Co-Chair)
The SOFT Times
is published by
SOFT, Inc.
Editors for
the 2013-2014 fiscal year :
Margaret & Jim Thompson
1232 Seminole Drive
Richardson, TX 75080
[email protected]
972-234-8788
Please submit all stories, pictures,
info, etc. to the above address.
If you wish to have items returned,
please include a self addressed,
stamped envelope.
You can only lose what you cling to. - Buddha
December 18, 2013
Happy Holidays to our friends and
family. We count our blessings every
year this time of year as we reflect on
the year that has gone by so quickly.
We hope this Christmas letter finds
you well and blessings abundant.
We’ve had a blessed year and are
most grateful for our associations with
our extended family, friends and loved
ones.
JIM - is working hard as ever. The last
4 years he was traveling for Kroger all
over the country. He was offered a
District Manager job back at Smith’s
about a year ago, so most of his
stores are in town, but he does have 4
stores in Wyoming that he tries to visit
at least once a month. We are so
grateful that we have him home more
often and are getting to know him
again. He truly loves his new job and
all of the employees he is able to be
in contact with. He says it’s very rewarding and of course he’s so happy
to be home to watch James grow up.
James loves his “Papa” and is very
excited when he comes home every
night.
DEBBIE- Continues to work in the
seasonal department at the Smith’s
corporate offices. I love being involved with the buying end of things at
Smith’s and love all the things I am
learning after being in the stores for
so many years which I also loved. It’s
just fun to learn new things and I am
doing that. I will celebrate 35 years
with the company next year. Oh my,
that time went by fast. Both of us are
enjoying our grandson James and
wonder what we ever did without him.
It’s been so fun to watch him grow
and learn things.
CHELSEA, SPENCER, AND JAMES
Continue to live with us while Spencer
is in graduate school at the U. James
just turned 2 on Dec. 2 and is a typical
2 year old and ALL BOY. It’s been so
fun to have that cute little guy greet us
every night when we come home from
a long day. He’s been a true joy.
Spencer works at 1-800-Contacts
while going to school and Chelsea is
still teaching a couple of undergraduate accounting classes at Westminster College. She was offered the op-
Happy Holidays to our friends and
family from the Dye Family of Utah
portunity to teach a graduate class
next year, so she’s excited for that
new adventure. She also works part
time as a contract attorney mostly
working here in Holladay with a local
firm. She likes being able to do work
from home so she can spend more
time with James.
KIMBER AND KADE – Bought a
new home this year. They sold their
condo in Murray and bought a home
with a yard also in Murray. I’m hoping
that means they’re ready for some
little Waltons. I’m sure we’ll be
blessed with baby Waltons someday,
but the grandogger Zoey is a joy in
our lives as well. James has taken a
huge liking to Zoey and treats her
like a sibling. Kade is still at Zion’s
Bank and Kimber is at First National
bank in their mortgage division.
MORGANNE – her memory continues to be our inspiration. We celebrated her 15th birthday this year. We
attended the annual SOFT (Support
Organization For Trisomy) conference in Providence Rhode Island this
year and as usual it was the highlight
of our summer. We took the whole
family and rented a house for the
kids (our kids and James) while we
were there so James would be able to
play. A two year old in a hotel room
for a week was not my idea of fun. We
all had a great time and James totally
enjoyed the Atlantic Ocean and the
beach. He also loved the SOFT kids
at conference. I love that he is learning about his Auntie Morganne and
what a great influence she was and is
in our lives and hopefully will be an
influence on him as well.
Our year was blessed and we thank
God every day for those blessings
and for our associations with our
friends and family. Please know you
are always in our hearts and continually in our prayers. Have a wonderful
Christmas and a happy, safe, healthy
and blessed New Year.
Love and Prayers,
Debbie and Jim Dye (and our angel
Morganne)
Chelsea, Spencer and James Woolley
Kimber, Kade and Zoey Walton
Joy in looking and comprehending is nature’s most beautiful gift.-Albert Einstein
Best Wishes for a Healthy New Year
2014
Mary Donohue sends her best
grin and smile to all her SOFT
friends. She looks like she is planning her New Year’s eve party and
won’t tell Mom what she is up to!
Jack
and
Judie Laird,
shown right,
send
their
best wishes
to all the
SOFT families.
It is often in the darkest skies that we see the brightest stars. ― Richard Evans
PROFESSIONAL VIEWPOINT: Journal Club
By: John C. Carey, MD, MPH, Medical Advisor, SOFT
Guon J., Wilfond BS, Farlow B, Brazg T, Janvier A. 2013. Our children are not a diagnosis: The experience of
parents who continue their pregnancies after a prenatal diagnosis of trisomy 13 or 18. Am J Med Genet Part A,
December 5. Epub ahead of print.
Nishi E, Takamizawa S, et. al, and Kosho T. 2013. Surgical intervention for esophageal atresia in patients with
trisomy 18. Am J Med Genet Part A, December 5. Epub ahead of print.
Two important articles have recently appeared on the online version of the American Journal of Medical Genetics, and both will be published in print in the February 2014 issue. These 2 papers provide new knowledge that
is helpful and significant in the care and management of children with trisomy 13 and 18.
The first of the two papers (cited above) is authored by the group led by Barb Farlow and Dr. Annie Janvier,
who have extended their questionnaire studies of parents of persons with trisomy 13 and 18 belonging to various internet-based support groups, some of which include SOFT families. The authors surveyed parents where
the baby had been diagnosed to have trisomy 13 or 18 during pregnancy, and the women chose to continue
their pregnancy. Since pregnancy termination rates in Europe for prenatally diagnosed pregnancies of trisomy
13 and 18 are over 90%, investigating the impressions and experiences of the families who continue is crucial
to our understanding of the challenges that the families face. The majority of parents did perceive some pressure to terminate, and most were told that the baby “would likely die before birth.”
What is most important for healthcare professionals and providers is that the parents describe “special” caretakers who gave balanced and personalized information, respected their choice, and provided support. The insights gained from this article are likely familiar to many families reading this piece, but this information is crucial
– I would assert – to healthcare providers.
The second paper by Nishi and colleagues is authored by the Japanese group led by Dr. Kosho and is additionally helpful in care and management. About 5% of children with trisomy 18 will have the gastrointestinal malformation called esophageal atresia (EA) with a tracheoesophageal fistula (TEF). There have been a number of
ethical discussions and published articles over the years about the management of newborns with trisomy 18
who have the EA and TEF as part of the syndrome. Dr. Nishi and Kosho and their coauthors looked at the outcome of newborns with trisomy 18 who underwent a palliative surgical approach compared to those who had
received more “radical” surgery for the EA/TEF. The outcome in the two groups was different with those receiving the radical surgery having 27% 1-year survival rate compared to 0% in the palliative surgery group. This
work – like Dr Kosho’s seminal paper in 2006 – suggests (although based on only 24 children) that, when more
intervention occurs, 1-year survival of infants with trisomy 18 increases. This issue is important, because, prior
to Dr. Kosho’s 2006 paper on intensive respiratory care, the question of what would happen if an infant with
trisomy 18 was treated with more intervention was essentially unknown. This work addresses that question for
one specific group (those with EA/TEF- about 5% of children) and adds more knowledge to this ongoing puzzle.
Hope is the dream of a waking man.-Aristotle
2014 Conference Planning Committee Report
St. Mary’s Home for Disabled Children
Cares for more than 80 children and young adults, from newborns to 21-year-olds, who have severe
disabilities live, play, go to school and receive the very best care at St. Mary’s Home. St. Mary’s also is
caring for adults older than 21 with the opening of The Albero House on our campus. Thanks to the
generosity of St. Mary’s they will be sponsoring a conference hot breakfast!
NORFOLK BOTANICAL GARDENS

Thursday
afternoon Grief
Outing

Norfolk Botanical Garden is nationally recognized for its deep-rooted history and celebrated for its
blooms in every season. In 1938 a WPA grant paid 220 African-American workers to clear 30 acres of
dense vegetation, sowing the seeds for what is now one of the largest collections of azaleas, camellias, roses and rhododendrons on the East Coast. The 155 acre garden is home to 40 distinctive
themed gardens, 95 species of birds and 30 kinds of butterflies. Our latest garden is World of Wonders – A Children’s Adventure Garden – a 3-acre garden where kids explore the connections between
plants, international culture and the environment – all while having fun. Norfolk Botanical Garden is a
Virginia Historic Landmark and is listed on the National Register of Historic Places.
CHKD is doing our medical clinics on Thursday afternoon, July 10th. They are providing a lunch for
parents and SOFT kids at noon prior to the start of the medical clinics. The specialties being offered are Neurology, Pulmonology, Cardiology, Gastroenterology, Orthopedics, ENT, Surgery, Urology
and Genetics.
Dr. John Carey, medical director for SOFT will speak at Grand Rounds at CHKD on Thursday morning.
It is never too late to be what you might have been.-George Eliot
2014 Conference Planning Committee Report
Rick Guidotti: Thursday Welcome Dinner Speaker
Friday morning Photo Shoot
Rick Guidotti, an award-winning former fashion photographer, has spent the past
fifteen years working internationally with advocacy organizations/NGOs, medical
schools, universities and other educational institutions to effect a sea-change in
societal attitudes towards individuals
living with genetic difference; his work has been published in newspapers, magazines and journals as diverse as Elle, GQ, People, the American Journal of Medical Genetics, The Lancet, Spirituality and Health, the Washington Post, Atlantic
Monthly and Life Magazine.
Rick is the founder and director of Positive Exposure, an innovative arts, education and advocacy organization, working with individuals living with genetic, physical, cognitive and behavioral difference. Positive Exposure utilizes the visual arts to significantly impact
the fields of genetics, mental health and human rights.
Rick Guidotti’s photographic exhibition, Positive Exposure; The Spirit of Difference, premiered at the
People’s Genome Celebration, June 2001, at the Smithsonian’s National Museum of Natural History in
DC. and continues to exhibit in galleries, museums and public arenas internationally.
Rick Guidotti’s Positive Exposure photo and video presentation explores the social and
psychological experiences of people living with genetic, physical, cognitive and behavioral conditions of
all ages and ethno-cultural heritages. Positive Exposure provides new opportunities to see individuals
living with a genetic difference first and foremost as a human being with his/her own challenges rather
than as a specific diagnosis/disease entity.
Rick Guidotti and Positive Exposure continue to celebrate the richness and beauty of human diversity.
Friday night
family outing
with backfield
picnic dinner
included
The Norfolk Tides are a minor league baseball team in the Triple-A International League. They
play at Harbor Park in Norfolk, Virginia. Since 2007 they have been a farm team of the Baltimore Orioles; prior to that, they had a 38-year affiliation with the New York Mets.
The Gwinnett Braves are a minor league baseball team based in unincorporated Gwinnett
County, Georgia within the Atlanta metropolitan area. The team plays in South Division of International
League and they are the Triple-A affiliate of the Atlanta Braves Major League Baseball club.
Friendship is born at that moment when one person says to another:”What! You, too? Thought I was the only one”-C.S. Lewis
Site of the Annual Picnic and
Memorial Balloon Release
Ceremony on Saturday, July 12th
"When Hampton Roads movers and shakers want to celebrate in style, they turn to celebrity Chef/Owner Phillip
Craig Thomason of VINTAGE kitchen, one of the hottest restaurants and special event destinations in the area." -Vow
magazine
Vintage Kitchen is a restaurant with a sweeping waterfront view of Virginia's most famous harbor/Elizabeth River
and is located within walking distance next to the Sheraton Norfolk Waterside Hotel. The restaurant has an outdoor lawn
area on the Elizabeth River for events of all sizes.
Older Sibling Outing on
Friday, July 11th
(ages 12-up)
The older SOFT Siblings will be bussed to Virginia Beach, VA for a fun outing at Ocean
Breeze Water Park.
849 General Booth Blvd.,
Virginia Beach, VA 23451
Phone: 757-422-4444
Bring Your Swimsuits!
Younger Sibling Outing on
Friday, July 11th
(ages 5-11)
221 High Street
Portsmouth, VA 23704
Phone: 757-393-5258
Actions speak louder than words, but not nearly as often.-Mark Twain
2014 Conference Planning Committee Members
Milan, T-18, and dad at the conference planning committee meeting. Cute little 3 year old Milan’s parents are Tony
and Yolanda Myrick.
Mary Steele, Ryan’s mom, shown left, Lynne Stockman,
Lyndsay’s mom, center and Tony Myrick, Milan’s dad.
They are attending the January SOFTconference planning committee meeting.
See Ryan Steele’s Story on page 22
Frank Barnes, left, & Rick Steele at the conference committee meeting. Frank and Ann are the parents of Megan, T-18, 1985-2004. Rick
and Mary are the parents of 14 year old Ryan, T-18 mosaic.
Lyndsay and dad enjoyed the conference committee meeting. Lyndsay, T-18 is 13 & 1/2 years
old and has grown a lot this year!
November/December 2012/January 2013, The SOFT Times, Page 12
If we are to live together in peace, we must come to know each other better.-Lyndon Johnson
2014 Conference Planning Committee Members
Shown left to right: Tony Myrick, Buster Stockman, Abir Schmidt and Ann Barnes in attendance at the January 18, 2014
SOFT Conference committee meeting held at the Stockman’s. Abir’s beautiful daughter, Summer, T-13, is 26 months old.
Get ready for “Rollin’ on the River”… the
Elizabeth River, that is.
J
O
I
N
S
O
F
T
2
0
1
4
The committee has
planned a
conference with
the needs of our
diverse membership in mind. They
are busy arranging
workshops, outings
and meals for us.
Won’t you join us
in July?
November/December 2012/January 2013, The SOFT Times, Page 13
Thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you
SOFT Sincerely Appreciates Your Generosity, And We Recognize The Love That These Donations Represent
Donations to SOFT’s General Funds
Ioannis Karmis
Krista Thompson and family
Dr. Nigel Croft
GoodSearch.com. This donation was earned
by SOFT supporters who visited Goodsearch.com when searching the web.
Jennifer Donovan
Barbara Dehn
Patricia Powell
United Way’s Donor Choice Program of
Greater Philadelphia and
Southern New Jersey
Scott Lindenbaum
Sandra Kerr
Manuel Reyna
Alyssa Vukson
Joseph and Laurie Hetzel
Amy’s Sweet Simplicity
Donations to the Joey Watson Fund, established to help families attend the
annual SOFT conference
Krista Thompson and family
Donations to the annual SOFT conference
Jenny, Marc, Sydney, Isaac and
Cohen Childress
In Memory of
Simon Dominic Crosier
Scott and Sheryl Crosier
Janet Staicoff
In Memory of
Samuel Matthew Vukson
Alyssa Vukson (Wolfe, LLC)
In Honor of
Thristan Williams
Mary Botello
In Memory of
Maggie Elisabeth Barlowe and
In Memory of Violet Ryan Barlowe
James Adames
In Memory of
Julia Grace Childress
Jenny, Marc, Sydney, Isaac and
Cohen Childress
In Memory of
Faith Anne Sewell
Matt and Betsy Toombs
The Hogan Family
Sherri Gribble
The Hourigan Family
In Memory of
Noelle Salaman
The Preferred Solutions Team
In Memory of
Nicholas Wright
Shannon K. MacMaster
Russel and Mary Waller
Robert and Rita Spoor
Barry Weaver: “Nick and his family have been
shining lights for me personally and professionally. I owe them so much for opening my
eyes to the beauty of creation that is in each of
us. Thank you!”
Mark Gilmore
Corey and Tricia Silver
Sharon and Gus Binkowski
Cindy Cook
Beth and Stacy Ward
David and Molly Wuethrich
Ret. Col. James and Anita Norton
Lawrence and Mary Banta
Sheryl Honegger and Bennie D. Hower
Sheryl and Scott Crosier
D. Scott and Catherine Fisher
David and Pam Becker
Tim and Marlys Bennington
James and Nancy Bresnahan
Philip and Malissa Josephson
Jay Pfister
State Farm Insurance, Human Resources
Darrell, Kurt, Pam, Mitch and Paul: “We all
work with Mark, and our hearts go out to Mark
and Jayne.”
Thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you
In Memory of
Jonathan Jamari Harrison
Pat and Jim Marker
Chris Marker
In Memory of
Regan Lawson
Aunt Chris, Uncie Craig and Cousin Carlie
In Memory of
Nora Jasmer Ohm
Ryan Flanders
Sioux Falls Up and Coming
Joe and Jane Newell
Denise Miller
In Memory of
Kamry Ann Thompson
Krista Thompson, “My family is thankful for
the support we were given with our daughter
Kamry Ann Thompson. We were blessed to
have an amazing nine days with her. Thank
you for giving families hope!”
Jeannie and Bill Mills
Debbie (Pender) and Jeff Owens, in memory of
Super Girl, baby Kamry
Bravo Company “Phantoms”
In Honor of
Krissy Krotzer
“A Butterfly’s Touch”, Running with Krissy
In Memory of
Frank Joseph Jorgensen
Diane Gaines, The Laremont School
In Memory of
Nicholas Moustirats
Marie Berhan
John and Maureen Giusti
Sandra Kerr
Christy and Brian Sizemore
In Memory of
Isabella Powell
Leila Hope Adamson
In Honor of
Crystal Faith Magtoto
Colleen Belmonte Magtoto and family,
“Crystal Faith celebrated her 2yr birthday on
Dec.2! God has blessed us so much, and we
hope to pay it
forward.”
Karen Austria
Connie Magnoto
Clinton Magtoto
Agnes Abulencia
Jarrel Abulencia
The Manuel Family
Michelle Hernandez
In Memory of
Rhys Austin Khoury
Elias, Amy and Wendy Khoury, “Rhys would
have been 3 years old on Dec. 14. We miss
him very much and hope he is looking down
on us each day feeling the love we have for
him.”
In Memory of
Keylinee Velasquez
Keysee Velasquez, “In honor of my baby sister, Keylinee. May she rest in peace. She will
always remain in my heart.”
In Honor of Baby Jackson Liberatore, Chris
and Brittany Liberatore
Daniel, Irene and Ethan Liberatore
In Honor of
Dr. Scott and Mrs. Vivian Showalter
Russell H. Showalter, Jr.
In Memory of
Jordan Arella Coulombe
Sally and Ray Boucher, her grandparents
In Honor of
Mari Logan
Jamie and Matt Emmert
In Memory of
Sarah Marcela Poole
Joseph Meijide
~
·
Do not dwell in the past, do not dwell in the future, concentrate the mind on the present moment.-Buddha
Full Circle
By Pam Healey
It was October 17, a cool autumn evening, when we veered right
away from our usual turn to our
health center and traveled a half mile
between the hospitals that flanked
Brookline Avenue and made up the
Longwood medical district that distinguishes Boston. We pulled into a
parking garage, its low ceilings, tight
turns and narrow parking spaces
familiar. They must have been more
familiar to Michael who parked there
a hundred times, while I was hospitalized three times, the last stay lasting over three months. Twentyseven years earlier, a dozen times
we had parked in the Francis Street
lot, crossed the street and tentatively
entered the hospital for our group
counseling sessions. We would
cross the lobby, then go upstairs to
meet with other parents trying to
grasp the death of their newborn.
There was always a sense at this
birthing hospital that everyone else
coming and going through the lobby
was joyfully visiting, welcoming and
exclaiming over a newborn that
would soon come home. Every time
we entered this hospital to face
again what had happened was an
act of courage. I did not want to talk
about something for which there
were no words, but here twice a
month we walked through the throng
of those celebrating a birth and
found our way to others whose loss
matched ours. Finally, there was
nothing more to say; healing would
have to happen elsewhere. I did not
want to return, and I have not in
more than two decades. This night,
as I entered under the arches of the
portico, then through the heavy glass
doors, I had a sense of familiarity: the
austere lobby, the bustle, the paging,
and the sense of happiness often
missing from other hospital lobbies.
We were directed to the right and followed a corridor to a new building for
maternity patients.
I carried Conor with me that
night, consciously, unavoidably, as
we walked away from the old building, where I had carried him after his
death. A young doctor had tried to
take him from me, but I held tighter,
carrying him to the Family Room,
where he had been baptized a few
days earlier. This older part of the
hospital is where we had left him a
few hours later, our lives changed. As
we entered the new area this October
evening, I noticed the overhead sign:
Mary Horrigan Connors Center for
Women's Health. I learned it is referred to as the Connors Center. It is
here that high risk pregnancies and at
risk neonates are cared for in the
largest NICU in New England. All the
healthy babies that are the norm also
spend their first few days here, as
they are checked on, and their moms
rest and practice new routines.
I wonder if the rocking chair we
gave in Conor’s memory made the
trip to the family room within the new
NICU. I wonder what is left of where
Conor and I spent three months,
while we held off his delivery a day at
a time, and I spent six and a half of
his seven days, with him between
nearby Children’s Hospital and the
Brigham. Now, in a sense the same
hospital carries his name, as well as
what memories we have. The sign is
also seen from the outside on a mas-
sive new building that dwarfs the towers where we stayed. Then and now,
nine thousand infants enter the world
at the Brigham. Twenty-seven years
ago, a nurse remarked that it had
been nine months, since they had had
a baby with trisomy 18; statistically,
they were overdue. She knew Conor
was coming. This night we were overjoyed to be welcoming one of the
healthy infants from the nine thousand, one of the many, who despite
everything that could go wrong, enter
the world healthy.
We took the elevator to the sixth
floor, negotiated the narrow corridors
and located Tara’s room. She was
seated on the bed, and beside her in
his small crib was her seven hour old
son, a pound bigger than Conor had
been at birth. Tara and Conor had
been close to the same birth weight.
She would not come home to us for
over four months. Tara, still tired, but
holding some remnants of the pre-birth
glamor she took the time to execute
after her water broke, was radiant.
She proudly and lovingly handed
Cyrus to me. He was tiny, fragile, but
alert. I had not held a baby so small
since Conor. Cyrus, with his long dark
hair, and dark eyes with a slightly
Asian cast, looks like his mother,
those Indian genes dominating. I
rocked him, talked softly to him and
marveled that he was here, doing all
the things a newborn was expected to
do. He was here free of tubes, wires
and uncertainty, easily cuddled and
responsive. The evening of his birth
we, his grandparents, had entered the
scenario we had expected for ourselves more than a quarter of a cen-
We are what we think. All that we are arises with our thoughts. With our thoughts we make the world.-Buddha
Full Circle
tury ago but had been denied. It was
time to experience a birth replete with
joy.
In the next few weeks, then
months, I helped care for Cyrus on the
weekends. To help hold off a feeding
by a few minutes, I played Teddy
Bear’s Picnic from Conor’s blue gingham teddy, which my mother had
bough at the hospital gift shop. This
now slightly worn bear with his
mushed nose, flat tail, and ragged ribbon had also serenaded Patrick and
Tara. I became involved in Cyrus’
baby routines. Giving Tara a break to
go to the gym, or shop, Cyrus and I
would settle on my bed, while he
looked around, took short naps and
kicked, and I did my computer work for
clients. Putting felt shapes on my
nearby white lampshade captured his
attention when his vision was developing and entertained him. Ode to Joy,
later Christmas carols, kept us both
happy. Now, he is a bit more insistent
if I work too long, and I have learned
to work with intermittent breaks, stopping every few sentences to play with
him with tag dog, Sophie the Giraffe,
mirror and rattle.
Tara has taken to this role, as if
she were always headed in only this
direction. She charts his feedings, has
found what I called well marketed
gadgets, that turned out to be well
chosen aids, even if we all somehow
managed the old fashioned way. She
has directed her fashion obsession to
infant clothes. I am still adjusting to
baby clothes with skulls and crossbones and mini camo, but she humors
me and, also, dresses him in baby
blue onesies with yellow ducks. She
has her favorite books, one a medical guide given by a SOFT mom,
and she reads regularly about developmental milestones and what may
be causing him to fuss. Her friends
are delighted by the first baby of the
group and help spoil him. Uncle Patrick took to him immediately, eager
to feed, hold and play with him and
wishes he were closer and working
fewer hours.
Pam and Cyrus
Many years ago, probably after
the suggestion of a chore to be completed before the trip to the beach,
my young niece Karen, now in her
early thirties, looked at my mother
and wisely said, “it is really hard being a mom, and it is really, really
hard being a kid, but I think it is not
so hard being a grandma.” Tara is
making motherhood look easy, as
she joyfully takes what she must do
in stride. We know there will be fatigue, doubts and challenges ahead,
but this is a blissful time. Cyrus
seems fortunately to have inherited
his father’s calm nature, but when a
feeding is delayed, I see his mother’s
relentlessness. I have decided Karen
had it right. After the challenges of
childhood and adolescence, young
adulthood and the wonderful but formidable tasks of motherhood, being a
grandmother is a delight. This grandmother business is all it is cracked up
to be.
I stayed put to write for the newsletter this morning, instead of an
early departure that would assure
driving ahead of the storm, so I
ended up riding the storm to Rhode
Island. With the temperature right at
freezing and dense snowflakes the
size of fists, the driving was stressful
as five inches of slush covered the
highway. Three times I was blinded
by gray road sludge that hit my windshield, the wipers only moving the
lower layer to let the higher layer
slide into place. I averaged 34 mph
on a 65 mph highway, until, at the
Rhode Island border, the snow gave
way to a gentle rain. I headed for the
beach, knowing by tomorrow the
promised biting cold, a gift from the
Dakotas, might preclude a beach
walk. The rain subsided and a silver
winter sun intermittently broke through
the grayness. I walked a few miles on
a deserted beach, looking for beach
glass and revising in my head what I
had just written. On a stretch of Narragansett Bay that rarely yields green
beach glass, our symbol for Conor, I
found several vintage pieces, emerald
green, rounded, and deeply burnished. I also found a rare treasure, a
convoluted, thick piece of brown bonfire glass: broken, melted, folded, then
If we could see the miracle of a single flower clearly, our whole life would change.-Buddha
Full Circle
sea-smoothed over decades in the turbulence of the bay. I
found the rounded end of an old bottle. I had reflected this
morning on my own journey, which had brought us back to
where we began. I had found its symbols a few hours later: the
green beach glass that connected us to our child and gave
reassurance that brokenness could be transformed, and bonfire glass, the product of fire, wind and water, that speaks of
the challenge of the crucible that changes and strengthens
what it does not destroy. The circle that had broken cleanly
from an old bottle and traveled intact fit perfectly in my gloved
hand. It took twenty-seven and a half years, but we had come
full circle.
Welcome Baby
Cyrus Ryan Clement
2013
Erin Jorgenson
Scholarship
Award Winner:
Drew Stockman
Shown left: Kim Jorgenson, Drew Stockman
and Gloria Jorgenson
A wise man, recognizing that the world is but an illusion, does not act as if it is real, so he escapes the suffering.-Buddha
The Erin Jorgenson Memorial
SOFT Sibling Scholarship
The Erin Jorgenson Memorial Scholarship was established by the 2010
Conference Hosts, Kim and Gloria Jorgenson, of Waubay, South Dakota,
in honor of their daughter Erin, who had a trisomy 18 condition. This
$500 annual scholarship is awarded based on criteria explained in the
application and is available to those attending college, university or trade
school. Applicant families must be current SOFT members but attendance at the annual conference is not required. The deadline for applying is 1 June, each year.
ERIN JORGENSON MEMORIAL SOFT-SIB SCHOLARSHIP
Qualifications
1. Must have/have had a sibling with Trisomy 18, Trisomy 13, or a Related Disorder.
2. Family must be paid-up SOFT members.
3. Applicant must be entering at least 2nd year of college, university, or tech
school.
4. Attendance at the upcoming SOFT Conference is desirable but not
mandatory.
5. Past recipients are not eligible to reapply.
Deadline
Applications and accompanying materials must be postmarked by June 1, 2013. Applicants are encouraged to submit applications early, so if any needed material is missing, it can be corrected before the deadline.
Presentation
The $500 Scholarship award will be announced and presented at the upcoming SOFT Conference. The money will be
given directly to the recipient to be used as needed:
a. Tuition and fees required to enroll or attend an educational institution, OR
b. Fees, books, supplies, and equipment required for courses of instruction.
If the recipient is unable to attend the SOFT Conference, the check will be mailed to him/her.
Application
Copies may be made of the following application, or to receive a printable application online e-mail Gloria Jorgenson at
[email protected]
Questions may be e-mailed or call Gloria at 605-947-4752(home) or 605-947-4461(work).
ERIN JORGENSON MEMORIAL SOFT-SIB SCHOLARSHIP APPLICATION
I. Personal Information
Name_____________________________________________________________________________________
Address____________________________________________________________________________________
City, State, Zip_______________________________________________________________________________
Phone_______________________________________________________________________
E-Mail_______________________________________________________________________
Career Goal__________________________________________________________________
___________________________________________________________________
Extracurricular Activities, Volunteer Activities, Work History_____________________________
_______________________________________________________________________
________________________________________________________________
He is able who thinks he is able.-Buddha
The Erin Jorgenson Memorial
SOFT Sibling Scholarship
_________________________________________________
_________________________________________________
_________________________________________________
_________________________________________________
_________________________________________________
II. Academic Information
School you will be attending_____________________________
Address_____________________________________________
City, State, Zip________________________________________
Phone (admissions office)______________________________
Anticipated Graduation Date (month/year)__________________
III. SOFT Sibling Information and Essay
SOFT Sibling Name___________________________________
Diagnosis___________________________________________
Please attach an essay of no more than 600 words about your SOFT
Sibling and the impact he or she had on your life.
IV. Please include two signed letters of recommendation. These may be
from employers, instructors, church contacts, etc.; not family members.
V. Application Certification, Signature and Date
I hereby certify that all of the information provided in this application is
complete and true to the best of my knowledge. I hereby grant permission for
the scholarship committee to contact my references and/or school if necessary,
and if granted this Scholarship I agree to the publication of my name and likeness.
International
Committee
Report
By Pam Healey
New international registrations include
two families from Brazil, two new families
from Canada, two from England and one
from Wales. There is one family each
from Austria, Australia, Costa Rica, Germany, The Netherlands, Russia and Turkey. The children have been diagnosed
with T-18, T-13, mosaic 13, 9 and partial
18. Some of these children have yet to be
born, many are infants and there is a nine
year old, a ten year old and a twenty four
year old. A few are deceased, one living
less than a day. We welcome our families
from around the globe. Our stories are
universal, and despite our language and
cultural differences, we are family united
by diagnosis and love of a special child.
We share similar joys and challenges on
our common journey.
Applicant’s Signature__________________________________
Date Submitted______________________________________
Mail completed application, postmarked no later than June 1, 2014, to
Kim and Gloria Jorgenson
10 High Plains Avenue
Waubay, SD 57273
Be sure to include with the signed and dated application:
● Your essay AND
● Your two letters of recommendation
________________________________
Friendship is the only cure for hatred, the only guarantee of peace.-Buddha
March is Trisomy Awareness Month
Submitted By Terre Krotzer
March is Trisomy Awareness month and between the Soft website (www.trisomy.org) and the Soft Facebook Group
(www.facebook.com/groups/TrisomySOFT/) there will be a lot happening!
Many of the projects we are planning will feature our children. Below you will find the link to submit a photo of your child
to have your child included in our Celebration.
Some highlights of the month will include a website slide show, daily activities and ideas for Trisomy Awareness your daily
life and a website scavenger hunt with Daily Giveaways!
We will once again have a Trisomy Awareness "cover photo" for your Facebook Wall that Terre
will personalize with your child's photo and information. Last year we had almost 100 Facebook cover photos out there
creating Trisomy Awareness and celebrating our children! Let’s take it over 100 this year.
If you aren’t already a member of our Facebook group, please drop in and join us!
Instructions for submitting photos to be included in our Trisomy Awareness Celebration
Please submit your child’s photo to: [email protected].
Include your child's name, diagnosis, birthdate and date of death if applicable. Please email with a subject line of “Photo
for 2014 Trisomy Awareness.” Also please let me know in the email if you want a Facebook cover photo created for you.
Running with Krissy
for Trisomy Awareness Month!
In the spirit of Trisomy Awareness month “Running with Krissy” is back in full
swing, and Larry and Krissy are back on the trail! Larry and Krissy will run in the
Alamo 13.1 in San Antonio, Texas on March 22, 2014. This will be their second
race and our vision is growing!
Go Krissy & Larry!!!
Pull yourself together and use what you have.-Betsy Canas Garmon
results came back a
few days later - MOSAIC TRISOMY 18.
Along with the
heart cath, Ryan
received a blood
transfusion
from
Daddy, started a new cardiac medication and GAINED a pound in a
week. He was also baptized that
week at the hospital. Busy week for
him!
We get this diagnosis and have
never heard of Trisomy 18! The geneticist is on vacation and our pediatrician explains what he can. So we
go to the Internet and are scared to
death! A week later, our geneticist
returns and meets with us and explains that Ryan will be writing his
own book because he is Mosaic. He
couldn't promise us that Ryan would
live a long life, but he also gave us
hope that with good medical care,
Ryan had a fighting chance.
Ryan was in and out of the hospital
a few more times for fevers, but his
feedings by mouth improved enough
that we stopped the NG feedings in
July. My husband was deployed for 6
months, so my mom and I with my
kids, attended the SOFT conference
in Orlando. What a wonderful experience!
We returned from Orlando and had
another visit with the cardiologist. By
that time, Ryan's weight gain had
slowed down again, his heart medications were at their limit, the hole
had not gotten smaller on its own and
it was time to operate. Rick (Daddy)
returned from his deployment mid
Sept and the surgery was scheduled
for Oct. 5th. Ryan was running one
of the "routine" temps of 102 degrees
but after running some tests, the surgeon and anesthesiologist decided to
go ahead. Ryan sailed through the
surgery itself, but then things went
downhill upon his arrival to the PICU.
By that evening his temp was up to
107 and they could not get it down.
Ryan suffered circulatory collapse
which resulted in a neurological insult. After 5 weeks in the hospital, we
brought home a totally different baby.
Ryan was rigid, was not seeing or
Introducing
Ryan Steele
After a totally normal pregnancy of
41 weeks, Ryan was born on December 23, 1999, weighing in at 7 lb. 6 oz.
and
measuring
19
inches
in
length. He had Apgar’s of 9 and 10
and seemed perfectly normal. His only
difficulty was latching on during breast
feeding. We were discharged late
Christmas eve. He and I struggled for
the next 2 days trying to get him to
nurse. We finally set up an appointment with a lactation consultant at our
Navy Hospital where Ryan was
born. We met with her for an hour,
and during that time, had some
luck. That same day, we visited the
pediatrician. Ryan was running a fever,
so they admitted him to the hospital. After 2 days and blood, urine and
spinal cultures, he was released. But
by that time was down to about 6 lbs.
At 2 weeks of age, his pediatrician
suspected a heart defect and referred
us to a pediatric cardiologist. Ryan
met with him at 3 weeks of age and
was diagnosed with a fairly large
VSD. Over the next few weeks we
struggled with feedings and very slow
weight gain.
At six weeks of age, his cardiologist
decided he did not look good, and
needed to be
admitted to the local
children's hospital for congestive heart
failure. It was during that stay that we
were taught NG tube feedings. At first,
Rick and I were both horrified at the
thought of inserting a tube down our
son's nose! Well, he came home, and
slowly started to gain weight. But since
more food was now going in, he
started to reflux. We dealt with that
and he continued to be monitored by
the cardiologists. But then someone
mentioned his "low set ears." We tried
to get more information, but no one
seemed to want to answer those questions. At 3 months of age, Ryan was
admitted to have a heart cath done. It
was then that the geneticist was called
in. They ran tests on his blood and the
hearing and cried 95% of the day and
night. We were given little hope that
this would change.
Fast forward and here we are
13years later.... 4 more SOFT conferences, a lot of doctors’ visits, a g-tube,
bilateral hip adductor release surgery
(February 2002), 2 sets of ear tubes,
tonsillectomy, adenoidectomy, a supraglotoplasty, twice broken femur, 3
wheelchairs,
a
VEST
machine,
COUGH Assist and many, many visits
from his therapists( and 1 Navy transfer). Ryan has made wonderful progress! He is hearing (after having his
first set of tubes placed in February
2001) and vocalizing. He has seizures, severe scoliosis, and constant
bowel issues, but on the positive side
of things, can hold his head up,
SMILES, LAUGHS, is gaining weight
and growing taller. He attends public
middle school and has a wonderful
teacher, aides and nurses there. Virginia’s EDCD waiver program and
Medicaid provide us up to 12 hours a
day of nursing care and some more
respite.
We take one day at a time and
thank God every day for each day we
have with Ryan, his big sister Abigail,
and little sister Ella! We also are so
excited to be a part of next year’s conference and can’t wait to see you all
there!
Ed. Note: The Steele family is planning your conference for this year!
Difficult things take a long time, impossible things a little longer.-Andre A. Jackson
Ryan, above, with big sister Abigail and little sister Ella
Introducing
Ryan Steele
ES
F
SO
MIL
S
T
His loved ones are very precious to Him and He does not lightly let them die-Psalm 116:15
Remembering Nicholas Wright
By Pam Healey
I do not know when I first met Nicholas and his parents, Jayne and
Mark, but he was young and adorable and drew us in. He beamed. So
did they. We were drawn to his energy and happy spirit. When not energized, he seemed content, comfortably part of his surroundings. I
remember helping in childcare years
ago. Dominick Welch had volunteered to help and had quickly attached himself to Nicholas, who
promised to be a fun play companion for the evening. We were all on
mats scattered across the floor.
Dom and Nicholas were playing,
entertaining each other with toys,
and Dom was talking to Nicholas,
who was responsive enough to keep
Dom right there, at his side and in
conversation. Suddenly, Nicholas
began to crawl across the mats.
Dominick was beside himself, jumping up and down, proclaiming, “He
crawls, he crawls, look at him, he
has trisomy 13 and he crawls.” I didn’t have the heart to tell Dom that
this wonder child had been crawling
for a few years. Instead, we talked
about how strong he was and coordinated to pull off such a feat, and
how his crawling allowed him to explore and satisfy his curiosity. Even
when he was a teenager in his
wheelchair,
Nicholas
always
seemed to be taking it all in, still exploring his environment and enjoying himself. He was energized by
being in the thick of things. He still
beamed. My pictures are evidence
that he was always smiling, pleased
with himself and happy to be part of
what was happening. He seemed to
thrive on activity, music and social
interaction.
Nicholas went to school, attended
church and was a long time member of SOFT, attending many conferences and inspiring his parents to
join conference committees in two
states. He used a walker, pushed
switches and played with musical
toys. He had a number of surgeries to
improve his quality of life and meet
medical needs and rebounded. He
lived a full life, which he left too soon,
and will be greatly missed.
Nicholas announced by his presence, his longevity and his tee shirts
with what trisomy 13 was all about.
He not only crawled and walked with
support, he rode his special trike and
was the king of special birthday
cakes, each representing the triumph
of another year, once unexpected by
some but expected by those who
knew him and his enduring spirit.
Nicholas was more than a prognosis,
that’s for sure. Those considering his
prognosis would not have predicted
his energy, lengthy survival despite
serious set backs along the way and
the great joy he experienced and
brought to others.
The name, Nicholas, consists of
the Greek words for victory and people. There are those who would see
this as an ironic name for someone
with limited communication and mobility, ongoing medical interventions, an
expected short lifespan and dependency on others for basic needs. Those
would be the prognosis people. As
Nicholas’ tee shirt announces: “It’s a
Diagnosis, not a Prognosis.” He did
well with the diagnosis and disproved
the prognosis.
Nicholas was victorious in a birth
that is rare, in being among the 1020% who survive the first year and
prevailing in the tiny percent of those
with trisomy 13 who survive nearly
two decades. He was victorious in his
influence on those who were fortunate
enough to come to know him, or
maybe just met him along the way.
His strong spirit outshines his diagnosis and its prognosis. He remains in
hearts and memories. That is victory.
He not only met developmental milestones amazing those who thought
they knew better and those who held
hope, but he developed a distinct and
charming personality. There is the
people part. Nicholas thrived in the
company of people. He drew them in
and lightened their spirits with his
smile. He reached out and kept people close to him. Nicholas made a
difference in the lives of others. Our
prayers and warm thoughts go out to
Jayne and Mark and other family
members. So many of us are grateful
that you generously shared Nicholas
with us at so many conferences.
I thank God upon every remembrance of you.-Philippians 1:3
N
I
C
H
O
L
A
S
Unable are the loved to die. For love is immortality-Emily Dickinson 1830-1886
Remembering Nicholas Wright
By Sheryl Crosier
I first met Nick about six months after our son, Simon went to heaven.
Our first introduction was at the
SOFT conference, July 2011, in Chicago. The next year, July 2012, I
had the privilege of serving on the
St. Louis SOFT conference committee with Nick’s parents, Mark and
Jayne. I quickly learned of their unconditional love for their son and it
was absolutely beautiful to observe
how much they adored and nurtured
their son.
At the picnic in St. Louis, before
we had the balloon release in memory of our angels, Nick grabbed my
necklace and played with my hair.
Alright, maybe it was more like he
pulled at my hair. I then kissed Nick
and told him how handsome he was.
At that moment, I knew that he was
connected to our son, Simon. I cannot put it into words, but I felt it completely.
Nick had a warm spirit and captivating eyes. Nick drew me in with
his contagious smile and moved my
heart. He created a joyful atmosphere and his special abilities were
obvious. It was as if he could listen
Nicholas Wright & Sheryl Crosier
to hearts and see something I couldn’t. I knew he was here for a reason
and his life was simple, yet extraordinary. Nick didn’t seem to judge anyone. My own imperfections were even
perfectly accepted by Nick. And, for
that, I am grateful.
While attending Nick’s visitation, it
was as if he was right there in the
church. There was such a peace and I
believe his warm spirit filled the building. There were many photos of Nick
and it was absolutely beautiful to witness his blessed personality from an
infant to a handsome young man. I will
always embrace his life as he continues to give hope to so many. He is my
treasured gift and I am so honored
and humbled to call Nick my friend.
Until we meet again, Nick you are forever in my heart.-Sheryl Crosier
SOFT Butterfly Wings
N
I
C
H
O
L
A
S
A very small degree of hope is sufficient to cause the birth of love.-Stendhal
Pediatric
Teams
By Pam Healey
This week there was a local NPR
presentation on a pediatric program
that integrates specialists who care
for children with chronic, life threatening illness. In “Helping Chronically
Ill Children,” two guests, Dr. Jerome
Groopman, Director of Experimental
Medicine at Beth Israel Deaconess
Medical Center and Dr. Joanne Wolf,
the founder of PACT, a sixteen year
old collaborative program of DanaFarber Cancer Institute and Boston’s
Children’s Hospital, were interviewed
about their involvement in an increasingly more common approach
to care for seriously ill children, who
are managed, not cured.
Medical technology and new approaches by physicians, who think
outside the box, has meant some
children live longer with debilitating
illness. Complex cardiac surgery,
new drugs, transplants and other
procedures have extended young
lives. Longevity does not mean pain
is absent or reduced, discomfort
ameliorated or emotional concerns
held at bay. Parents and patients,
especially those who have an illness
or condition with no blueprint, live
with uncertainty. Parents, grateful
that their children have survived despite a diagnosis, often feel helpless
in making them more comfortable
and less afraid. A solution was found
in adding an extra team of people
who will facilitate communication
among specialists and bring clarity to
the care of the whole child, thus adding value without adding complexity.
The team members understand palliative care in a way specialists do
not. At Harvard Medical School in
four years of training, medical students receive one half day on palliative care, along with whatever they
may pick up on rotations.That short
lesson is an improvement over past
teaching practice in medical schools.
It is important to understand what
palliative care is designed to do. Palliative care, which focuses on the
whole patient, and aims to improve
quality of life by minimizing symptoms and relieving stress and fears,
is typically administered by a team of
doctors, often specialists, and other
professionals. Team members assist
parents and/or patients in making
difficult medical decisions, by giving
information, answering questions and
listening. They also coordinate care
with medical specialists, such as cardiologists, urologists, oncologists,
neurologists, nutritionists and others
and help those making and keeping
appointments navigate the health
care system, which for those with
complex illness is necessarily complex. Perhaps the most important role
is support in making a plan for living
well, consistent with values, hopes
(and reality) and immediate and long
range needs and goals. Support for
parents and siblings means support
for the child struggling to survive.
This concept of teams for pediatric
patients with serious disease is being
carried out at Boston Children’s Hospital and at other hospitals across the
country. In Boston it is called the Pediatric Advanced Care Team or
PACT. Such a team is designed to
bring the old fashioned family pediatrician’s style of medicine, that is indepth, personal caring, to the specialist whose care focuses on one
aspect of the illness or condition. The
teams coordinate the care of the
many specialists, support families as
they make difficult decisions regarding treatment, and reassure the child,
along with ameliorating pain and
anxiety. The palliative teams are becoming more common; more than
69% of the 162 hospitals surveyed
recently have such a program in
place, and most are less than a decade old.
Issues have been raised on the
value of an additional team for children who may see a dozen or more
specialists. Financial resources are
already constrained, and adding the
expense of more professionals to the
care of children requiring so many
specialists with limited hope for survival for many can be seen as an unnecessary allocation of the limited
hospital resources. The program
model has been studied, and it was
found programs such as PACT reduce costs of medical care for the
children the team serves. There are
fewer hospitalizations, which saves
money and adds to normalcy for the
child. A UCLA study found there were
savings of $1600 per child a month
from a third shorter (or fewer) hospital
stays. Better communication among
specialists, facilitated by PACT,
means better determination of necessary procedures, less redundancy
and streamlining of appointments.
Another problem is that hospitals survive financially on fee per service and
admissions. PACT members makes
house calls, getting to know the child
in normal surroundings, spend time
with families around general concerns, stop by during hospitalizations-- all difficult to define by billable
hours, and they reduce hospitalizations.
Palliative care works from the values of the family, carrying out what
needs to be and can be done without
alienating people. There are conversations that need to happen, some of
them difficult, some involving questions for which there are no sure answers. The PACT professionals bring
sensitivity to these conversations,
thereby helping both the child and the
family. The ability to direct these important and sensitive discussions
comes from knowledge, training, and
experience. PACT members also
typically have specialty training, so
specialists respect them, more than
they might respect generalists.
Teams such as PACT seem to be
the wave of the future in children’s
hospitals that care for children with
debilitating illness. For some young
patients with rare conditions, complex
care, and changing needs, the pathway model, which has increasingly
been the approach in medicine, just
Beware of how you take away hope from another human being.-Oliver Wendell Holmes
Book Review by Pam Healey
Who Lives, Who Dies, Who Decides? Abortion, Neonatal Care, Assisted
Dying, and Capital Punishment
Who Lives, Who Dies, Who Decides?: Abortion, Neonatal Care,
Assisted Dying, and Capital Punishment, by Sheldon Ekland-Olson,
Routledge: New York, 2012
As we acknowledge the 40th anniversary of Roe v. Wade, the value of
life question is raised repeatedly. For
those of us who have faced a prenatal diagnosis or a chromosomal diagnosis of a neonate, the discussion is
far from subjective. It raises emotions in a way not engendered by
those with convictions of faith, constitutional law or individual rights, for
our convictions are also experientially grounded. When termination is
suggested or treatment withheld, the
value of an individual life is questioned.
Last year a book was published
that explores in depth the issues of
life and death that have been controversial as we declare whose rights
need to be protected, who has the
right to make such decisions, and
how does the balance of protections
and rights change over time. Who
Lives, Who Dies, Who Decides?:
Abortion, Neonatal Care, Assisted
Dying, and Capital Punishment, is a
historical, theological, sociological,
legal, ethical, philosophical, and
medical text developed from the
popular University of Texas-Austin
undergraduate course by author
Sheldon Ekland-Olson. Behind each
personal, political, medical or legal
decision is the determination of social worth and social mandate. Also
considered is the belief in the sanctity of life and the need to alleviate
human suffering once it is apparent.
He explores the importance of individual autonomy and death with dignity and the boundaries of protecting
life in individuals at the beginning of
life, a boundary not yet defined by
consensus.
The section titles give a roadmap
for the book: A Moral System
Evolves, The Early Moments and
Months of Life, The Boundaries of
Tolerable Suffering and Taking Life
and Inflicting Suffering. The author
explains we justify the violation of the
sanctity of life and alleviation of suffering, despite their being universal
moral imperatives, but do so with
both “empathy and logic” as we reline
boundaries and resolve dilemmas.
Change occurs when scientific or
technological advances and specific
events raise questions, clarify situations or extend understanding of what
is implied in the concept of social
worth, leading to new resolutions or
definitions that establish revised protective boundaries. He reminds us
that the moral systems that are derived from this “do so along a jagged
and often contentious path” (IX).
To understand how boundaries
are established, it is essential to understand the eugenics movement in
the United States. Drawing on the
writings of Thomas Malthus, concerned about an unchecked population, and Charles Darwin and the survival of the fittest, then Francis Galton who proposed that preventing
suffering by manipulation was merciful, discussions ensued and policy
developed. Progressive reformers
and intellectuals determined that
some lives are more worthy than oth-
ers, and this belief spread to social reform initiatives. The well educated prosperous members of society were encouraged to have children, and those
seen as less worthy were discouraged,
or, even prevented, from procreating.
Migration policies kept out individuals
seen as undesirable. Life was protected
by favoring the productive members of
society. The idea of differential worth of
individuals was established. Today’s
quality of life yardstick seems to be a
variation on that theme.
The book is rich with detail and ideas.
It is a social history in which decisions
came over time, opponents reacted and
dissension remained. Legal cases are
presented in depth, and the law and
response to it discussed. He presents
the right to privacy and what that implies
and how that lead to laws about contraceptive rights. He looks at constitutional rights. He also looks at the role of
the three branches of government and
that laws must be made by the legislative branch not the Supreme Court that
decides cases like Roe v. Wade. He
presents both the well organized and
chaotic response to the Supreme
Court’s decision in Roe v. Wade to determine the boundaries of life. He presents those galvanized by what did not
seem a valid interpretation of the constitution and how they have kept the discussion alive for 40 years. He carefully
builds the steps by which one legal decision leads to another and laws result,
the public reacts, law enforcement reacts and what was “settled” is anything
but settled. He gives an in depth presentation of the road to the legalization of
abortion and what ensued. He explores
the previous situation of back alley
abortions, then changing technology,
concern for those making choices that
endangered lives, the constitution and
how it could be interpreted about a
situation not a concern to the Founding
Fathers, and new arguments countering
The dreams of the broken are mightier than the wishes of the dead.-Dodinsky
Book Review by Pam Healey
Who Lives, Who Dies, Who Decides? . . .
the decision. There is a great deal to
digest, and the reader cannot help but
come away with a broader and deeper
understanding of an issue that is rarely
relegated to the background. The next
chapter addresses the history of partial
birth abortion. The author remains neutral, presenting the history, the players,
the drama, and the arguments. He also
discusses the implications. For instance, the Partial Birth Abortion Ban
of 2003 did not save any lives. It
merely changed procedure. Terminations were still carried out after 24
weeks, in the womb, not in the birth
canal. This is not a chapter for the
squeamish.
Of most interest to many of us in
SOFT is the chapter titled, “Should the
Baby Live? He begins by stating that,
“It was a long established principle of
the law that infants born alive were
considered persons and fully entitled to
the protection of the law” (185).
Charles T. Canady, a member of Congress for eight years, now a Florida
Supreme Court judge, was Chairman
of the House Judiciary Subcommittee
on the Constitution and was concerned
about cultural and legal changes that
were more accepting of death. Peter
Singer, a Princeton bioethicist was proposing that only after 28 days would an
infant have the full protection of the law
and have the right to live. His argument
was based on the lack of rationality
and consciousness in a newborn. Personhood, which should be protected,
was not a characteristic of newborns.
He was pushing the boundary of what
constituted protected life. He also argued that infants should not suffer; protecting and preserving life must be balanced against the suffering resulting
from medical conditions. Canady introduced the Born-Alive Protection Act of
2000, which was signed into law two
years later. What had not seen to be
necessary to protect was threatened by
new ideas about life and death. Several cases in which treatment was with-
held from newborns with Down syndrome were discussed. Subsequent
lawsuits were presented. The role of
doctors determining if treatment was
futile, the rights of parents, the determination of suffering and potential
were discussed. Doctors consider if
there is a 99.999% chance treatment
will not work, then it is futile. For others the .001% chance may constitute
some hope.
Eklund-Olson writes, “A sense of
futility comes when all hope is gone
to achieve an acceptable quality of
life. Some argue hope should give
way to realistic assessment. For others, nothing is futile until the moment
of death” (202). There is uncertainty.
Definitions of quality of life, futility,
potential are not clearly defined. Intentions are unclear. It is not established who makes such decisions
about an infant’s care and life. The
child does not have autonomy, and
there are potentially competing advocates and caregivers: parents, other
relatives, physicians, even lawyers,
judges and government officials who
have weighed in cases that then became public. Consensus is perhaps
rare and establishing the boundaries
to protect life of the newly born may
be impossible. The author concludes
“tension free resolution of the embedded dilemmas remain elusive, perhaps unachievable” (203). The conviction of sometimes choosing death
as the better choice was extended
across the lifespan giving rise to the
right to die movement, rooted in what
is tolerable suffering and the right for
death with dignity.
This is a book worth reading, but
it takes time, a quiet place for concentration and time for reflection. I
have only reviewed some chapters,
but all are important, if the reader is
to examine personal convictions related to the sanctity of life, personal
decision making, constitutional rights,
and exceptions that may push at conviction. This book addresses theory
of human rights, but is grounded in real
cases. We are moving forward or
maybe it is backward on this and being
informed is important for those who
want to participate in the dialogue that
leads to increased awareness of what is
at stake, protection consistent with personal and societal values and necessary change.
Pediatric Teams
does not work. There is uncertainty and
no clear path. It is the team that helps
forge new territory for children who in
earlier decades would not have survived
as long. There value is increasingly recognized as parents come to depend on
them.
Still, problems remain. Palliative care
is seen by other professionals as a
death watch, although it is different from
Hospice, which focuses on the final
weeks or months of a patient’s life.
Roles played by members of the team
seem to be redundant to some; family
physicians and specialists can do the
same. There is the fear that specialists
may be less attentive when the team is
involved, so some cared decreases.
There needs to be a protocol by which
children are assigned to the team: clear
guidelines should be in place so the limited resources of the team are used with
those best able to benefit. Federally,
there is support, but states have made
varying commitment to providing pediatric palliative care. The Concurrent Care
for Children under the Affordable Care
Act
requires that Medicare pay for palliative
care for those pediatric patients eligible
for hospice care. Other solutions may
come out of this, such as retraining family pediatricians in palliative care, so they
can coordinate the care of their young
patients and know what to say to parents to elicit the information they need to
help them.
For those interested an in depth look at
caring for chronically ill children, “Lives
Less Ordinary,” by Jerome Groopman is
in the January 20, 2014 edition of The
New Yorker.
Fall seven times, stand up eight.-Japanese Proverb
Noninvasive Prenatal Genetic Screening
By Pam Healey
In a recent article published in Scientific American available online http://
www.scientificamerican.com/
article.cfm?id=what-fetal-genome,
the revolutionary noninvasive prenatal screening that can provide comprehensive genetic data is discussed
in terms of both benefit and ethical
dilemma. What we can do technologically may be ahead of what we
have thoughtfully considered, which
could lead to concerns, problems,
and controversy. There have been
considerable advances in the time
gestationally at which genetic data
can be made available and in the
scope of that data in providing parents with information about their unborn baby that can lead to decisions.
This is not just the possibility of revealing chromosomal anomalies, but
a look across the yet to be born
child’s lifespan at genetic predisposition to both adult onset diseases and
subtler conditions that may be challenging. It may also reveal the lack of
preferred physical and behavioral
traits. At this time such an extensive
blueprint of an individual’s genome is
possible, but cost and ethical concerns about how data will be used
has curtailed practice. Currently,
screening is available through a maternal blood screen, which, when
concerns are raised for trisomy and a
few other conditions, leads to amniocentesis or CVS, which carry some
risk of miscarriage. Now, extensive
screening from maternal blood and
paternal saliva is quick and easy, but
what it reveals may be more challenging than imagined.
In a January 16, 2014 article in
The New England Journal of Medicine, Prenatal Whole-Genome Sequencing — Is the Quest to Know a
Fetus’s Future Ethical?
I.R. Yurkiewicz, B.R. Korf, and L.S.
Lehmann, Lehman, the director of the
Center for Bioethics at Brigham and
Women’s Hospital, presents with her
colleagues arguments for parents to
receive extensive genetic information
about their unborn child. Additional
information when presented through
counseling allows parents to make
informed decisions and allows them
to prepare for what their child might
need. This includes conditions their
child might develop, a matter of prediction, not diagnosis. This raises the
questions that must be addressed
before parents begin receiving extensive genetic information. What diseases should be revealed? When
should children be informed of adult
onset disease revealed to be in their
genome. The initial consent to the
screen is by parents, not the unborn
child, raising concerns of the rights of
the child who when older would have
not wanted to know the medical future.
It is interesting that nothing is mentioned about the present use of the
limited genetic information freely
available. The termination of children
with conditions physicians cannot
Trisomy 18/13 Research Project
Pam Healey, who conducted an experiences at diagnosis survey in 2001-2, is conducting a similar study to compare experiences. This is open to parents who received a diagnosis of trisomy 18 or 13 in the past five years. This includes a prenatal or postnatal
diagnosis and is for parents of all children with a diagnosis of trisomy 18 or 13 (full, partial, mosaic), including stillborn, elected termination, and liveborn. It is important that as
many people as possible participate. There were 117 responses to the first study, and
many parents wrote that it was therapeutic for them to share their story and have their
child be part of a study that will help other parents. All responses will be coded and kept
confidential.
If you are interested please email your interest and address to
[email protected], call 781-862-8273 or write to Pam Healey 18 Richard Rd. Lexington, MA
cure, conditions that are debilitating
and without hope is not discussed.
That seems to be a given, or a topic
considered well discussed and managed at this time. The focus is on
opening the Pandora’s box of mapping
the entire genome of the unborn child,
when prices drop, ramifications are
considered, public policy established
and public opinion is swayed. Many of
us remember that babies just arrived,
their gender and biological problems
unknown until birth. Routine screening
and ultrasounds changed that. Learning about the baby before birth has
become commonplace. Now, the information available will expand, options
will be considered, actions taken that
will change who we are collectively.
The on-line comments to the article
are telling. One responder could not
imagine anything negative resulting in
something that would “make smarter,
healthier children.” Another condemns
parents who would willingly allow a
child to be born with a disease and
thus suffer. Others condemn “probing
the womb” and termination, and one
makes reference to Gattaca, a 1997
sci-fi movie that takes place in the “not
so distant future” in which eugenics
assures more perfect children and
DNA determines class and destiny.
Starting this month with a $6
million dollar grant from your tax dollars via the National Institutes of
Health, Brigham and Women’s Hospital and Children’s Hospital will follow
480 newborns, half healthy, half sick,
and their parents for five years
through the BabySeq Project. Each
child’s genome will be mapped. One
goal is to integrate genomic information into the care a newborn receives.
Those involved present what they are
doing as what has been done “for
quite some time” and as normal as
cholesterol screening and determining
BMI index to advise for life style
changes. It would seem that in terms
of using genome mapping to learn
about the youngest among us, the
future is now.
There is no telling how many miles you will have to run while chasing a dream-Author Unknown
Sometimes we just can’t wait for
the next conference to get together
with friends. The Barnes, Hayes
and Thompson families met in Ardmore, Oklahoma for an enjoyable
lunch on January 4, 1014. This was
quite the feat since Thompson’s
live in Texas and the Barnes’ s live
in North Carolina-that leaves the
Hayes family with the easy travel!
As we prepared for a group photo,
Ron hurried Megan to the car to escape the wind-Greta was not that
lucky. Frank was busy holding all
the goodie bags. That left Jim to
escort the ladies to the bench for a
windy photo op.
I thank God upon every remembrance of you.-Philippians 1:3
Remembering SOFT
Angel Wings
NAME
Alexia Marie Cichon
Alexia Patricia Bishop
Andicia Miriam Arjmand
Annie Dudeney
Brady Logan Eshleman
Carlie Elizabeth Cagle
Conor Michael Healey
Cristian Daniel Leal
Dominic Allen D'Aprile
Eliza Rose Elliott
Elizabeth Ann Hilmes
Emerald Ireland Donovan
Erin Caleigh James
Erin Laurissa Handel
Garrett Stephen Twardowski
Greyson Nelly Torres
Haley Angel Ortega
Isaac Quinn Miller
Jessica Amber Brady
Joan Elizabeth Taleshi
Joanna Christine Hassan
John Jacob Jordan Johnston
Johnny Emmanuel Nichols
Julia Lynn Taylor
Karl Joseph Johnson
Khloe Violet Schaeuble
BORN
3/5/2013
9/24/2011
7/5/1981
2/3/1995
4/10/2002
3/16/2002
4/2/1986
1/27/2011
4/13/2006
12/14/2011
7/13/1987
4/11/2009
10/11/1995
2/22/1978
4/9/1992
7/23/2012
4/17/2003
2/19/2001
12/17/1996
2/9/1999
10/14/1974
2/6/2012
10/22/1994
12/3/1995
11/15/2002
10/1/2010
ANGEL WINGS
4/1/2013
2/17/2012
4/18/1986
3/10/2009
2/6/2007
3/17/2002
4/9/1986
2/25/2011
4/13/2006
4/24/2012
4/8/1999
4/11/2009
3/29/2013
3/22/2013
4/10/2001
4/11/2013
4/17/2003
3/2/2001
2/7/1997
2/16/1999
2/4/2013
2/7/2012
3/15/2009
2/3/1996
2/19/2003
2/28/2011
His loved ones are very precious to Him and He does not lightly let them die-Psalm 116:15
Remembering SOFT
Angel Wings
NAME
Lauren Beth Price
Lauren Paige Gipe
Logan John Watson Graham
Marla Kay Parker
Maureen Elizabeth Queener
Michael Scholten
Michelle Marie Richie
Mitchell Taeke Hazewindus-Devries
Nathaniel Troy Popielarz
Nicholas Cupo
Nicole Jennifer Waege
Nina Carreiro Zambelli
Olivia Marie Nelson
Osborne Kayson Tyler
Patrick David Showalter
Rachel Emilia Nelson
Rachelle Kay Kohl
Roy James Bolan
Ryan Lamar Gant
Ryder Alled Brooks
Samuel Mabeus
Sarah Elizabeth Lindenbaum
Sarah Louise Weston
Shelby Rayne Ruggles
Siomha Joelie Devereux
Sophia Grace Rector
Sydney Jean Wise
Thomas James Skidmore
Trinity Ann Smith
Virginia Susanna Miller
Zion Alexander Lint
BORN
12/18/1987
1/12/1987
2/17/2011
3/7/1972
2/4/2002
4/25/2010
7/21/1992
3/12/2002
4/24/2012
1/22/1989
2/10/1986
2/27/2012
3/16/2011
2/13/2008
2/6/1987
2/22/2012
10/29/1996
1/31/2001
12/18/1991
3/8/2013
7/17/2006
6/8/1998
4/18/1993
4/9/2010
2/13/2013
2/19/2013
12/14/2011
8/2/1968
11/16/2012
3/3/1993
5/2/2001
ANGEL WINGS
4/8/1988
2/12/1989
2/17/2011
3/5/1985
4/8/2002
4/28/2010
3/12/2006
3/15/2002
4/24/2012
2/3/1989
2/12/2004
3/26/2012
3/16/2011
2/13/2008
4/18/1987
2/24/2012
2/25/1998
2/3/2001
2/22/1992
3/8/2013
2/29/2008
3/4/2001
4/18/1993
4/12/2010
2/13/2013
2/19/2013
2/25/2012
2/13/1990
2/23/2013
3/3/1993
2/16/2010
We’re linked to the internet at http://www.trisomy.org
Deadline for the May/June/July 2014
Issue of The SOFT Times
Is 15 April 2014
Join
SOFT
July
9-13,
2014

SOFT Times Newsletter, April 2014

Transcription

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