live the dream and help the little ones at cheo

THE FACES OF CHEO
A PA R T N E R S H I P B E T W E E N
T H E O T TA WA C I T I Z E N A N D C H E O
CHEO
D REAM OF A
LIFETIME
Meet the people who keep CHEO going 3
BABY THEO
LOTTERY
Tiny CHEO
patient is a
fighter 7
O T T A W A C I T I Z E N M O N D AY, N O V E M B E R 9 , 2 0 1 5
This year’s Minto Dream Home combines warm textures and contemporary design. A must-see! LU CI A F I G U E RE D O
LIVE THE DREAM AND HELP
THE LITTLE ONES AT CHEO
ORDERING A
T I C K E T I S E A S Y…
HERE’S HOW:
BY K AT R I NA BU S S EY
Every year the centerpiece of the
Dream of a Lifetime Lottery is the
Minto Dream Home. And every
year there are new and exciting
features of the home that create a
buzz in the community. This year
you can ice skate in your house.
That’s right. Lace up your skates
and step into your very own indoor
rink to skate with your family.
Thanks to a wonderful line-up of
sponsors, trades and suppliers, the
rink and so many other beautiful
features are included in the home.
With over $2.6 million in prizing
and a grand prize package worth
over $1.7 million, ticket buyers will
not want to miss out!
Visit the Dream Home in person
at 800 Percival Crescent, Manotick.
If an in-person visit isn’t possible
take a fabulous virtual tour online
at the newly designed site: www.
dreamofalifetime.ca. The grand
prize includes the Minto Dream
Home but also one lucky winner
will walk away with $100,000 cash,
a 2016 Chevy Camaro 2SS from
Myers Automotive Group, house
cleaning for a year and $5,000 in
groceries from Farm Boy. Truly
amazing!
■
■
■
Online at www.dreamofalifetime.ca
By phone at 613-722-5437 or
1-877-562-5437
In-person at the Minto Dream
Home located at 800 Percival
Crescent in Manotick, or in-person
at nearly 200 local branches of
TD Canada Trust, Scotiabank, RBC
Royal Bank, BMO Bank of Montreal,
CIBC and National Bank in the
Ottawa area.
The 50/50 Draw was such a huge
success last year that the minimum jackpot has been raised to
$250,000. Last year’s winner won
over half a million dollars! That
could be you! To be eligible for this
prize you must order a Dream of
a Lifetime Lottery ticket. You are
then eligible to order as many
50/50 tickets as you wish! Tickets
for the Dream of a Lifetime Lottery
are $100 each or three for $250,
while tickets for the 50/50 Draw
are one for $10, five for $25, or 15
for $50.
For a full listing of prizes please
visit www.dreamofalifetime.ca
LUCIA FIGUER EDO
ST EP HANIE E GAN
LU CI A F I G U E RE D O
EARLY
EARL
Y
BIRD
P
PRIZE
R
I
Z
E
40 x 10 ad
OVER
95,000
10648452
LIVE THE DREAM AND HELP
THE LITTLE ONES AT CHEO
INCLUDING A ONCE IN A LIFETIME
®
TRIP TO THE 2016 NHL ALL-STAR
GAME IN NASHVILLE
$
TICKETS
100 EACH
$
OR
WORTH
Lottery License #7459 / 50/50 Draw License #7460
ORDER BEFORE MIDNIGHT
MIDNIGHT,, FRIDA
FRIDAY
Y NOVEMBER 13
3 FOR $250
OR YOU COULD WIN
ONE OF 2,500
BONUS TICKETS
ORDER NOW 24/7 • DREAMOFALIFETIME.CA • 613-722-KIDS OR 1-877-562-KIDS
OTT10648452_1_1
2
CHEO DREAM OF A LIFETIME LOTTERY
M O N D A Y, N O V E M B E R 9 , 2 0 1 5 O T T A W A C I T I Z E N
10
A PA R T N E R S H I P B E T W E E N T H E O T TA WA C I T I Z E N A N D C H E O
Top
BY S T E PH A N I E E G A N
reasons
to order a CHEO
Dream of a Lifetime
Lottery ticket!
In addition to knowing the great things your support of the Dream of a Lifetime Lottery brings to the kids and families at CHEO, is the bonus of having a chance to live the dream! Here is our Top 10 list of favourite features in the
Minto Dream Home that will make you want to buy a ticket and pack your bags!
1.
2.
This year’s Dream Home features 5,035 square feet of master-crafted living space
featuring high end finishes for a perfect marriage of function and fabulous! Minto’s Cedar home design has a cozy and welcoming interior – with a modern twist.
LUCIA FIGUEREDO
3.
4.
Entertaining family and friends can be as elegant or
casual as you want it to be in this inviting contemporary dining and living space where you’ll share great
meals and inspired conversation. STEPHANIE EGAN
What better way to spend
an evening than curled
up in front of this doublesided fireplace and feature chimney that climbs
a full two storeys. In the
daytime, this great room
is flooded with natural
light. LUCIA FIGUEREDO
It’s all about location! The CHEO Dream Home is
tucked into Minto’s Mahogany community close to
the amenities Manotick has to offer: dining by the
water, shops, services and greenspace all around.
It’s everything you need, while retaining its village
charm. JANA CHYTILOVA/OTTAWA CITIZEN
5.
The kitchen is the heart of any home and this chef’s
paradise has plenty of prep space, brilliant storage
– including a butler’s pantry - and ample seating.
Blending elements of modern and rustic design sets
this up to be a favourite for the cook and diners alike.
LUCIA FIGUEREDO
7.
6.
The colour palette of soft greys and warm wood-tones
carries into this gorgeous master suite, complete with
a flat screen TV and seating area. What’s behind that
wall? An open-concept dressing room and closet
system! LUCIA FIGUEREDO
(above and right): This rec
space is perfect for entertaining kids of all ages!
There’s a full wet bar to
accommodate beverages
and snacks, a giant projection screen and games
area rounded out by lots
of comfy seating. Oh yeah
– and a popcorn machine!
LUCIA FIGUEREDO
Enjoying your spacious
deck and fully landscaped private yard is
enhanced with this little
gem – a barrel sauna that
brings a touch of Nordic
spa into your own backyard. LUCIA FIGUEREDO
8.
Imagine having your very own spa-like setting that
you never have to leave? Wake up under the gentle
rain shower or soak the stress of the day away in the
deep, free standing tub. This luxury-driven master
ensuite is your retreat! STEPHANIE EGAN
10.
9.
Work on your slap shot and keep your skating skills sharp with your very own
synthetic ice rink that works with your regular ice skates! Complete with nets,
scoreboard and cheering crowd - you’ll be ready for the big league. There’s even a
mini locker room with a water station. MARK HOLLERON/OTTAWA AT HOME
CHEO DREAM OF A LIFETIME LOTTERY
M O N D A Y, N O V E M B E R 9 , 2 0 1 5 O T T A W A C I T I Z E N
A PA R T N E R S H I P B E T W E E N T H E O T TA WA C I T I Z E N A N D C H E O
THE FACES OF CHEO
how fragile the brain really is and
they think ‘wow, maybe we should
be wearing a helmet to protect our
brain because once our skull fractures we have no protection.’ It’s a
soft organ. This is what defines us.
This is what defines our personality. This is what’s responsible for
our movement, for our speech, for
our intellect and who we are. So
we have, I think, a duty to protect
this organ. So we start them off at
a young age. If you do this early on,
it’s much easier — they program it
within themselves to do this. The
results that we see now are amazing. We still see examples of children who are hospitalized for long
periods, but the incidence has been
reduced significantly. The children
that do come to the hospital are not
here as long. We do see the benefits
of protecting the brain, of wearing
a helmet, and we don’t see the longterm disabilities as much as in the
past.”
Lynn Kelly, lab manager, CHEO Research Institute
“Every day is different. It’s always fun to come into work and
see what new challenges present themselves. I make sure that
everything in the lab is running
properly, that everybody has
what they need to do their work.
I’m solving problems all the time,
trying to help with experiments,
trying to help repair equipment,
or find things, or keep people
working safely. There is all kinds
of research that goes on here at
the Research Institute. There’s
cancer, diabetes, AIDS. And
what’s really cool about the Research Institute is that we work
at a molecular level. So cancer or
diabetes just doesn’t follow one
particular path. All the pathways
in your body intersect. We work
as a team. Each week, two labs
present their results. And so one
of the groups will be sitting there
and they’ll say ‘hey, wait a minute. That pathway is really close
to what we’re working on.’ And the
next thing you know, there’s synergy going on. Your body is made
up of thousands of pathways and
when you find out that they cross,
it means the science here gets advanced even faster. It’s the best job
in the world. I love my job. Twenty
years I’ve been here and I don’t
think there’s a single day I got up
and dreaded coming to work. And
I’ve worked in a lot of labs. I’ve taken what I thought were the best of
all those places and brought them
here. And that’s how I like the lab
to be run — taking the best of everything. The people are fantastic;
they work together. It’s a team effort. It’s a great atmosphere.”
“My role involves everything from
getting the study up and running
— to applying for ethics; applying
for Health Canada approvals. But
probably the biggest and most important role is screening and talking to families and inviting them
to participate in the research studies. It’s always up to the patient,
but our job is to fully explain the
study, explain exactly what would
be involved in participating. Usually, the families are very receptive. They like to feel like they’re
contributing to something that
will better the care of children.
There are a variety of studies going on, but definitely I prefer the
studies where there is patient interaction and we are approaching
the families and getting consent.
We’re doing research on Vitamin
D and the role it plays in critical illness. We’re doing a study looking
at the role of hydrocortisone, or
steroids, in the treatment of septic
shock. These are both newer areas
that haven’t really been studied
in pediatric, critically ill children
before. I like the people — both
the patients, but also the people
working at CHEO. Everyone’s so
involved and enthusiastic about
their job.”
Margaret Berry, volunteer and former
nurse, parental presence at induction
program
“We’re in charge of the parent, so
the parent can go with the child
into the operating room until they
have been induced and put asleep.
So once the child is asleep and the
anesthesiologist says to us ‘that’s it;
give your child a kiss,’ we get them
out of there and they go for coffee
and we go on to the next one. The
program is about seven years old. It
was a new program when it started
here; there were only one or two
other hospitals around Ontario doing it at the time. Now, I think it’s
pretty much the norm that parents
can stay with their child — if they
choose — until their child’s asleep.
It’s very good for the kids, but it’s
good for the parents too, to be able
to stay with their child until they’re
asleep. It’s hard on some parents.
And as a volunteer you have to sort
of gauge that. I stand behind the
parent (with hands out) just in case
they pass out or are feeling weak or
they’re weepy or crying. There are
doctors and nurses there looking
after the child; my responsibility
is the parent — make sure they’re
comfortable; make sure they’re
properly gowned and attired, in
the right place, making sure they’re
not touching anything they’re not
supposed to touch. And, really,
their job — the parents’ job — is to
pay attention to their child, and
so I pay attention to them. When
I first started it was just me. And
now there are two volunteers in
the morning and two in the afternoon. It’s absolutely wonderful to
be a volunteer. You feel like you’re
helping. It’s so uplifting to come
and be appreciated. We’re really
made to feel like the role we have is
important in the working of CHEO.
I just love it. I love coming and being with the children. I love the
staff. It’s fun to be here. It’s a good
place to be, a happy place to be.”
Diane Sharp, nurse, care facilitator,
vascular access team
Stéphane Bourcier, CHEO food services
“I mostly take care of the room
service, but I also do some coffee
shop shifts as well as some other
shifts around, like receiver. I like
the accuracy of our service. Kids
are always happy to see food, and
to see them smile, it makes you
smile too. That’s a good feeling.
They might not understand what
they’re going through or the procedures, but at least food they understand. They can relate to food.
S T O R I E S A N D PH O T O S :
S T E PH E N T H O R N E ,
POSTMEDIA WORKS
Katie O’Hearn, research coordinator,
Pediatric Intensive Care Unit
Dr. Michael Vassilyadi, neurosurgeon
“It’s jello with Carnation milk. You
keep it overnight in the fridge and
the next day you pop it out. It’s a
secret formula that simulates the
texture of the real brain. My wife
Tassy is the coordinator and I’m
the director of Ottawa Think First/
Parachute. We go to schools and
community events with a team of
volunteers and speak to the kids
about how important it is to protect your brain. When the children
actually touch this, they realize
3
And for hospital food, it is pretty
good. We’re always looking for new
options, new food. We do surveys
throughout the year to get feedback so we don’t always serve the
same thing. We’re always tracking what people like, what people
don’t like, something they want to
see on the menu. The surveys help
us improve our service. There are
a lot of chicken nuggets and fries.
Spaghetti and meat sauce, that’s a
popular one. In the morning, it’s
always bacon. We accommodate
dietary restrictions — diabetic,
gluten-free, ketogenic. In the six
years I’ve been here, we’ve always
had something new around the
corner — a new system or a new
procedure we’ve got to follow. So
we’re always up to date with what
we need to do; we’re always on top
of the service that we’ve got to provide, as well.”
“I’m retiring soon. I’ve been at
CHEO 41 years, since it opened.
We respond to calls on the floors
for requests for blood work, for IV
starts, for troubleshooting of central lines, for pic (peripherally inserted central catheter) requests,
for care and maintenance of all
those pic requests. We liaise with
the community to look after lines
that are out in the community. So if
they have a problem with their line
they call us; they come in and we
meet them in emerg and solve the
problem. There have been lots and
lots of improvements in equipment,
in programs. Things are standardized right across Canada; we all do
the same thing. There is a lot of collaboration with the hospitals. And
we also collaborate with the community. It’s been fun, lots of fun. I
love being with the kids, that’s my
favourite thing. Unfortunately,
drawing blood and IV therapy are
the most important diagnostic tools
that the physicians have to tell them
what the patient’s body is doing.
We’re not doing a nice job. But when
you go in and a child says ‘oh, I’m so
glad it’s you,’ that’s very rewarding.
And you get to know the parents. We
have a lot of children who come into
the hospital — and they come back,
and they come back, and they come
back. They may have chronic conditions. We see them a lot. You get it
(the vein) on the first try and they
say ‘thanks.’ You’ve got to do the best
you can for it not to be a bad experience for the child. I’ve worked
with some marvelous people over
the years — really good operations
directors who have allowed us to
grow, to go to conferences where
you network with other pic teams
from across Canada. It’s like a camaraderie. We’re in a vascular world.”
4
CHEO DREAM OF A LIFETIME LOTTERY
M O N D A Y, N O V E M B E R 9 , 2 0 1 5 O T T A W A C I T I Z E N
A PA R T N E R S H I P B E T W E E N T H E O T TA WA C I T I Z E N A N D C H E O
Patient
Profile
Clara spends quality time with her pony Turfara. S TE PH AN I E E G AN
CHEO care helps teen ride off
into the sunset ... healthy and happy
BY S T E PH A N I E E G A N
Without
CHEO – I’d
probably be in
a wheelchair.
CLARA VON MALTZAHN
Clara von Maltzahn sits astride
her pony, Turfara. It’s a misty October morning and with purple
riding crop in hand, she deftly
guides her steed around the perimeter of a barn just outside
the city. She gushes about how
much she loves riding: “I usually
ride with her a couple of times a
week,” Clara says of Turfara. “I
do a bit of jumping, but we really
love cantering!”
For those not well versed in all
things equestrian, the canter is a
controlled, three-beat gait, faster
than a trot, but shy of a gallop.
“It makes me feel like people in
movies or books, like Lucy Pevensie in Narnia on horseback … it’s
like Turfara and me!”
Clara didn’t ride as much over
the summer months because of her
other hobby: competitive sailing.
In winter, she skis.
Cantering, sailing, downhill skiing – not activities one would associate with a 14 year old living with
a sometimes debilitating form of
arthritis.
“Systemic onset juvenile idiopathic arthritis (JIA),” Clara says.
The words roll off her tongue too
easily. She’s been dealing with
these words and this condition
since being diagnosed at the age
of six.
“It was Christmas, and I was
on the couch in a lot of pain and
not able to move. Poppy, my sister
fetched my presents for me, which
was very nice of her,” Clara remembers.
The memories are still fresh for
her mom Sarah as well.
“Clara just seemed ‘off.’ She had
come down with the chicken pox
and hadn’t really bounced back
from it,” Sarah says. “She began
complaining about pain in her
wrist and it just went around her
body. She also suffered high fevers.
X-rays showed nothing.”
It was the holidays, so Clara visited a few walk-in clinics when a
pediatrician she saw called CHEO.
Clara was booked quickly for tests
to determine the source of her pain
and fevers.
“I remember one horrible day –
when the possibility of leukemia
was presented to us,” Sarah says.
“Clara spent the whole day getting
a full workup and by the end of the
day we had an answer. Thankfully
that wasn’t it.” The doctors narrowed it down to JIA and began
treating Clara immediately.
Now, her condition is managed
with medications. But it didn’t
happen overnight.
“There were times when I
couldn’t even walk to the kitchen,”
Clara recalls.
But, with the help of medication,
Clara got her life back. “Without
CHEO – I’d probably be in a wheelchair,” she says matter-of-factly.
“Actually, I feel very lucky that
this happened to me. I would feel
terrible if another kid had this and
couldn’t deal with it like I can.”
And why does she think it’s important that people support CHEO
through the Dream of a Lifetime
Lottery? “So kids can have a brighter future,” she says. “They should
be able to fulfill their dreams and
shouldn’t be stopped because they
have a medical condition.”
Clara’s optimism is something
the whole family shares. “We realize how fortunate we are. We’ve
known families who haven’t had
good news,” Sarah says, quietly.
“Clara has had great doctors and
CHEO has provided great support
to all of us.”
As Clara halts Turfara, Sarah
asks: “Do you want to ride some
more?”
“Of course I want to ride some
more,” Clara exclaims. “I only got
to canter one way!”
And with that, she’s off.
THE FOLLOWING COMPANIES GENEROUSLY PARTNER WITH THE CHILDREN’S
HOSPITAL OF EASTERN ONTARIO IN SUPPORT OF THE MINTO DREAM HOME.
AMBASSADOR HVAC INC.
KOFFMAN SIGNS
POPPA CORN CORP.
APPLIANCE CANADA
KOTT LUMBER
POTVIN KITCHEN & BATH
ART DIRECTION
LES VENTES BERGERON SALES
BARWOOD FLOORING
HANSGROHE AXOR
MOUNTAIN GRANITE
ALEXANDRIA MOULDING
MIRAGE HARDWOOD FLOORS
DELTA FAUCET
SAMSUNG RADIANZ QUARTZ SURFACES
KENTWOOD FLOORS
MAAX BATH
R. MCCOWAN
BERNACKI & BEAUDRY DESIGN CORP.
LAURENT LEBLANC LTD.
REBEC & KROES
CITY PLASTERING
LANARK CEDAR
SIGNATURE AUDIO VIDEO
D & H FENCING
LA-Z-BOY FURNITURE GALLERIES
SIGNATURE FIREPLACES
DULUX PAINTS
LIVING LIGHTING
SMARTRINK
EURO TILE & STONE
MARCEL BRAZEAU LTD.
SUITE DREAMS HOME EMPORIUM
F.D. FOUNTAIN LANDSCAPE
ARCHITECTURE
MILL STREET FLORIST
THE FIREPLACE CENTER & PATIO SHOP
MINTO COMMUNITIES INC.
TOMLINSON READY MIX
GEOSYNTHETIC SYSTEMS
MIRROR WORKS
TRUELOCK INTERLOCK
GINO J. AIELLO LANDSCAPE ARCHITECT
NUTRI-LAWN
VAC-O-BEC
GREELY SAND & GRAVEL
WESTBORO FLOORING & DÉCOR
GREENLIFE INC.
OTTAWA CLASSIC STAIRS &
BANNISTERS INC.
GREENWAY TURF INC.
OTTAWA GARAGE MAKEOVERS
HICKORY DICKORY DECK
OTTAWA SENATORS
HUNTER DOUGLAS WINDOW FASHIONS
PALASON BILLIARDS (OTTAWA) INC.
JMD FIRST-CLASS CONTRACTING INC.
PERKINS HOME BLDG. CENTRE
KISS DESIGN GROUP
PERMACON
SHAW INDUSTRIES GROUP
SCHNIER GESCO LP
SCHLUTER SYSTEMS
MAPEI
MONDAY, NOVEMBER 9, 2015
OTTAWA CITIZEN
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Caribbean cruises from
Destination Anywhere
Vacations to the Dominican
Republic from Marlin Travel
& Transat Vacations
TRAVEL
Performances at the NAC
and dining at Le Café
Shopping sprees
from Costco and
Farm Boy
SHOPPING
Season and game day tickets
from the Ottawa Senators
ENTERTAINMENT
LIVE THE DREAM AND HELP THE LITTLE ONES AT CHEO
OTT10648453_1_1
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CHEO DREAM OF A LIFETIME LOTTERY
M O N D A Y, N O V E M B E R 9 , 2 0 1 5 O T T A W A C I T I Z E N
A PA R T N E R S H I P B E T W E E N T H E O T TA WA C I T I Z E N A N D C H E O
HOSPITAL HIGHLIGHTS
Behind the scenes at CHEO
BY A LY S S A NA D E R
Jeremy Wiggins, a respiratory therapist at CHEO, shows off one of the hospital’s critical care ventilators. R H O N DA MC IN TOSH
Taking it one breath at a time
Breathing is something most people take for granted. But for some
of the sickest patients at CHEO,
just taking one small breath can
be a struggle. Thanks to CHEO’s
amazing team of respiratory therapists, parents can feel reassured
knowing their little ones (and big
ones) are in good hands.
CHEO’s respiratory therapists
(RTs) care for the hospital’s most
critical patients – some on the
very brink of life and death. When
a patient is rushed to CHEO in
critical condition, the role of the
RT is to manage the patient’s airway and maintain breathing with
equipment like ventilators, which
basically replace the work of the
lungs.
Today’s sophisticated ventilators offer a wide range of functions
that support a child’s attempt to
breathe and are much more sensitive to the patient’s own respiratory effort, meaning they are more
comfortable for patients.
Ventilators are life-saving pieces
of equipment used every day at
CHEO. With the ongoing support
of the community, CHEO was able
to purchase four critical care ventilators totalling $200,000.
The expertise of CHEO’s caring
and compassionate respiratory
therapists along with this life-saving equipment means patients and
parents can breathe a sigh of relief
knowing that the right equipment
will be ready and waiting when it
is needed most.
Marilyn Cassidy, Interlink nurse. R HONDA MCINT OSH
Linking oncology families to support
Every cancer diagnosis leads to
a tough journey which no family
wants to face.
Luckily, CHEO is fortunate to
have a unique program, POGO’s
Pediatric Interlink Community
Cancer Nursing Program, to support families faced with a cancer
diagnosis.
The POGO Interlink Nursing
Program at CHEO is comprised
of two nurses who work with the
hospital and community teams to
make sure every oncology family’s
needs are met by linking them with
supports and services in the hospital and community. Every family
has different needs, so Interlink
Nurses get to know each one to try
to understand what support they
may need. By linking each family with the many different community and government support
programs, they are better able to
adjust to the difficult challenge of
living with cancer.
The Interlink Nurses also provide education and support to
schools, through classroom visits,
meeting with teachers, arranging
home tutoring, and helping patients as they return to school. The
benefits of early connection and
correct information to the school
are enormous, dispelling myths
and providing open communication and increased support for the
patient and family.
The goal of the Interlink Program is to make the best of a difficult diagnosis for each family.
Whether by linking them to support programs, or coming up with
creative ways to brighten a child’s
day – it all adds up to making this
journey a little bit easier for patients and their families.
VAT nurse, Kristen Bertrand, uses a transilluminator to better see CHEO patient Christina Wang’s veins. R H O N DA MC IN TOSH
Spot that vein
We’ve all heard that nurses are
the everyday superheroes in our
community. But did you also know
they have superhero powers? The
Vascular Access Team, known as
the VAT at CHEO, fly into action to
support the drawing of blood and
starting IVs to make this process as
smooth and painless as possible for
CHEO’s patients.
The VAT are specially trained
to handle the trickiest of situations. Factors like chronic illness,
age, weight, type of treatment or
simply fear, all affect our veins. So,
when there’s difficulty identifying
a healthy vein, the expert VAT
nurses are called in to help.
Having an IV put in or blood
drawn can be very traumatic and
scary for kids, teenagers and their
families. Many are already upset
and often sleep deprived. Some
kids even feel incredibly anxious
receiving a poke from a needle.
So the goal is always to make the
procedure as painless as possible
in one “pick.”
Luckily the VAT has a special
superhero-tool up their sleeves
to make this happen - one that allows them to see through skin! This
tool, called a transilluminator, is a
portable, hands-free device worn
on the head that uses ultraviolet
light to illuminate the veins under
the skin so that the nurse can see
the healthiest veins. This means
the best vein is picked on the first
try, leaving patients, parents and
nurse a bit more relieved and a lot
happier.
Ready, Set, Action! CHEO’s Anaphylaxis Action Plan
For some, allergies tend to just be
annoying, causing itchy eyes and
runny noses. But for others, allergies can be so severe that they are
life-threatening.
That is why it is so important to
know the right actions to take, in
the right order, so that a reaction
can be properly treated, right away.
Researchers at CHEO noticed
that both patients and parents
have trouble recognizing the
symptoms of a severe allergic reaction and can be confused and
even scared about what to do
when it happens. That is why a
team at CHEO, led by Dr. Waleed
Alqurashi, a physician in CHEO’s
emergency department, is working on an Anaphylaxis Action
Plan. Anaphylaxis is the medical
term for a severe allergic reaction.
Researchers designed an easy
to understand guide that is childfriendly, with colourful pictures to
clearly and easily explain what to
do at the first sign of a severe allergic reaction.
In the next couple of months,
CHEO’s spiritual support manager, Gerardo Quintanar. EVAN AR MOR ER
Creating a journey of love
CHEO doctors will implement
this action plan with their patients,
and CHEO researchers will further
study how effective it is in helping
kids and parents understand what
to do and, most importantly, if they
feel more comfortable when a reac-
tion occurs.
When a severe allergic reaction
happens our natural response is to
panic. Using images helps communicate information quickly so that
in those moments you will know
exactly what you need to do.
While hospitals are medical settings, with science as their driving
force, it is important never to forget the human side of what patients
and families are going through.
These are real people, sometimes
facing very tough situations, like
chronic illness, trauma and even
end of life.
CHEO’s spiritual support manager, Gerardo Quintanar, supports
patients’ and families’ spiritual
well being by bringing in the human angle to what is happening in
their lives. He does this by providing them with tools and resources
for how to cope. Many families have
questions, but Gerardo doesn’t
necessarily bring the answers. He
is more like a coach, helping families understand and find meaning
no matter the diagnosis.
One misconception about
CHEO’s spiritual support services
is that only the saddest of situations need this type of support. But
oftentimes the role of the spiritual
support manager is simply to act as
someone for families to talk to or
help them absorb new information
or a new diagnosis.
It is all about creating a journey
for each family, and supporting
them in the way that they want to
be supported during their time at
CHEO.
CHEO DREAM OF A LIFETIME LOTTERY
M O N D A Y, N O V E M B E R 9 , 2 0 1 5 O T T A W A C I T I Z E N
7
A PA R T N E R S H I P B E T W E E N T H E O T TA WA C I T I Z E N A N D C H E O
Patient
Profile
Wehbe family grateful for CHEO’s expertise. S TE PH AN I E E G AN
Theo proves to be a true fighter
BY S T E PH A N I E E G A N
Where do
we even start?
Dr. Bettolli was
always in good
spirits and
constantly reassured us. All
of the nurses
in NICU and
beyond were
amazing.
JULIE WEHBE
Julie and Melhem Wehbe welcomed a tiny bundle of joy into the
world on April 26. Theo weighed
just 4 pounds, 4 ounces and was
taken to CHEO’s Neonatal Intensive Care Unit (NICU) for observation because of his size. The
medical team suspected he had
potential intestinal issues and
worked quickly to determine
what was going on. Just hours
old, tiny Theo underwent many
ultrasounds and X-rays and even
an MRI.
Theo proved from day one that
he’s a fighter, something he comes
by honestly; his parents own and
operate a martial arts studio and
his dad, Melhem is a Sensei trained
in several disciplines.
“Theo really earned his fighter
status in those first few days,” his
mom, Julie, remembers. “The
first 24 hours were the hardest –
because of the unknown. We went
from the joy of having our first
baby, to being told something was
wrong, but no one knew exactly
what that was.”
It was discovered Theo had an
imperforate anus. There was no
connection between his rectum
and anus meaning his bowels
couldn’t properly function. He was
immediately scheduled for surgery
and given a colostomy, spending
his first week in NICU and sent
home at eight days old.
A month later, Theo had his second surgery to correct the malformation and anus which did not
have an opening. It was harrowing
for Theo and his parents. The expected four-hour procedure lasted
12 hours because of various complications.
“That was a tough day…We were
being updated on the complications throughout the day. The surgery finally ended at 8:00 that night
and we got to see our son an hour
and-a-half later,” Julie recalls. “It
was mentally and emotionally exhausting.” Their anticipated twoday hospital stay also stretched
into eight. But, Julie and Melhem
were so happy to get their baby boy
healthy and home, they wanted to
share their story and thank their
CHEO family.
“Where do we even start? Dr.
Bettolli was always in good spirits
and constantly reassured us. All
of the nurses in NICU and beyond
were amazing,” Julie recalls. “I
remember trying to apply a colostomy bag to our little Theo. He was
so tiny and the bags are big. The
nurses helped us troubleshoot our
issues and we couldn’t have done it
without them.”
Theo recently returned to CHEO
for surgery to close his colostomy.
This time, everything went according to plan – with no complications.
A series of tests also showed his
prognosis is excellent.
Melhem and Julie have a message for parents who find them-
selves at CHEO: “You’ll be well
taken care of. If you’re worried
you can’t handle whatever situation comes along – there will be
someone there, an expert, to help
you through it,” Julie says. “We
knew nothing about CHEO before
our experience, but we’re so glad
it’s here and that so many people
support our children’s hospital.”
Despite his tough start, Theo is
now an active, happy baby. “Following his last surgery – the holes
in his belly didn’t keep him from
being his happy-go-lucky self,” his
mom says. “He’s a smiler. He’s also
starting to giggle and play with his
feet!”
At a recent appointment, Julie
and Melhem were told that Theo
is healing nicely and doesn’t need
to return to CHEO until he starts
eating solid food. “I never thought
I’d be so eager to change dirty diapers,” Julie laughs. “We love that
we are finally doing regular baby
stuff.”
CHEO’s CARE for RARE team: Looking
for answers for families the world over
BY A LY S S A NA D E R
The great thing about modern
medicine is that when you have
a health concern, you can often
get the answers you need within
weeks of seeing your family doctor
or specialist.
But sometimes symptoms may
not be so clear cut. In some cases
what you have may be really rare.
So rare in fact that only a few other people in the world exhibit the
same symptoms and have the same
condition. This can make it tricky
for doctors to provide patients with
a diagnosis and come up with the
best treatment plans.
But leading researchers like
CHEO’s Drs. Kym Boycott, Alex
MacKenzie and their nation-wide
CARE for RARE team are hard at
work trying to make life-saving
discoveries for patients with rare
diseases.
Patients like seven year old
Noah. Noah’s parents noticed that
he wasn’t meeting his developmental milestones. Upon testing, it was
discovered that Noah was born
with a very small cerebellum, a part
of his brain, which is only getting
smaller – affecting his language
and motor skills. After visiting
numerous clinics at CHEO, Noah
was introduced to Dr. Boycott. She
is confident that Noah has a rare
genetic condition.
Noah is one of many children
where the genetic cause of his rare
disease is still unknown. There are
Noah’s family happy that CHEO program offers hope.
an estimated 7,000 rare genetic
diseases in the world affecting as
many as one million Canadians,
most of which are children and
only half of which can be linked to
a specific genetic abnormality. This
leaves almost half of the diseases
identifiable only by the symptoms
that they cause. Families of children with a suspected but undiagnosed rare disease are left in the
dark, often waiting years to get a
conclusive diagnosis and, with it,
a personalized treatment plan for
their child.
This is what CARE for RARE is
striving to change.
A national program led by CHEO,
CARE for RARE focuses on the improvement of both the diagnosis
and treatment of rare diseases. Its
team identifies new rare disease
genes for patients across Canada
and around the world, as well as
developing novel therapeutic approaches. As part of the project,
they created a shared database
for clinicians across the country
to contribute patient information and genetic code data. This
database is used to help match
DNA from patients anywhere in
the world with the same rare and
previously undiscovered disease.
Since 2011, CARE for RARE has
successfully identified the genetic cause of almost 80 novel rare
diseases, meaning that CHEO is
providing answers to literally
thousands of patients and families across Canada and around the
world. Like modern-day Sherlock
Holmes, these researchers are
medical detectives examining the
clues in our genes to identify those
which cause rare diseases.
But sadly some patients, like
Noah, are still waiting for an answer.
Through the technological advancement of genetic equipment
and the support of the community,
CHEO researchers are now able to
examine Noah’s 20,000 genes all
at once, looking for a potential ge-
netic cause for his disease. Noah’s
data has been loaded into the database, though a match has yet to be
found. But this database is Noah’s
best chance for a diagnosis.
“We need to find another child
somewhere in the world with the
same clinical challenges and a
mutation in the same gene. This
is what this database is enabling
us to do,” says Dr. Boycott.
The frustration families feel is
enormous, but CHEO’s CARE for
RARE research program represents hope. This new technology
offers families the potential for an
answer when before there wasn’t
anywhere to turn.
Noah is a happy child who is
doing great in the physical support program at his school. While
Noah and his family face daily challenges, they remain positive. “We
know that Noah is in the best hands
possible. If there is going to be an
answer, Dr. Boycott will be the one
to get it for us,” says Barb Shantz,
Noah’s mom. “We just need to take
one day at a time.”
The bigger the database, the
greater the chances are that researchers and physicians will find
a match for Noah and get answers
for other families sooner. Donations support key equipment and
resources for CARE for RARE at
CHEO so that this expertise is
available to all patients with rare
diseases in our community, across
Canada, and around the world –
truly living CHEO’s vision.
D8
MONDAY, NOVEMBER 9, 2015
OTTAWA CITIZEN
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Take the Minto Dream Home
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Visit all our brand new Show Homes
at locations across the city.
SHOW
HOME
2370 TENTH LINE ROAD
174
ORLÉANS
417
SHOW
HOMES
2370 TENTH LINE ROAD
380 HUNTMAR DRIVE
KANATA
4005 STRANDHERD DRIVE
SHOW
HOMES
4005 STRANDHERD DRIVE
108 MORETTO COURT
MANOTICK
416
KANATA
380 Huntmar Drive
MANOTICK
108 Moretto Court
ORLÉANS
2370 Tenth Line Road
4 brand new
Show Homes
Minto Dream Home for CHEO – Cedar
Other Show Homes: Walnut and Poplar
Avenue Townhome –
Downing
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E.&.O.E. Prices and specifications are subject to change without notice. Restrictions apply.
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