Number seven - Fondacioni Fëmijët Shqiptarë

Belkisa:
I started school…
Thank you!
11 more children treated
at the Foundation started
school this year
1
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to help us
continuing our mission
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The Albanian Children Foundation “Domenick Scaglione”
“Dëshmorët e 4 Shkurtit” Street, Pallati nr. 30, behind Calsberg restaurant
Tirana, Albania P.O.Box 8285;
Tel/Fax: + 355 4 2 270 663
2
Outside view of the Regional Center for Autism” in Farke.
Content
Autism-Success story
Belkisa: I started school…Thank you!
11 more children treated at the Foundation
started school this year
fq. 4
Autism- Crisis in Public Health
New Center in Tirana – Amazing Achievement
fq. 19
Children - Support
The Albanian Children Foundation Fondacioni Fëmijët Shqiptarë,
protects children’s rights
fq. 22
Thalassemia - The Foundation Collaboration with Vienna
Held the Scientific Symposium on Pediatric Oncohematolgy
fq. 30
Charity
The foundation has donated wheelchairs to the hospitals in
Tirana and to the individuals in need
fq. 35
3
Personage story
Belkisa : I started school…
Thank you!
Beliksa. First day at the “Nobel” school.
T
his is Belkisa. She is 6 years
old. She has delicate features, a fragile yet versatile body,
big brown eyes that express a
deep and clever vision.
A small girl that at the time she
turned 2 could not say any other word but “Mom” and “Dad”
and would repeat only actions
she saw in others. She could
not connect to the world that
surrounded her or understand
other people’s thoughts.
Valmira, her mother, who was
dedicated to the smallest details
to her daughters, realized that
her second child was not developing like her older one, Selma. That’s when she started to
struggle to understand the big
WHY, which, 4 years ago was
almost impossible to answer.
During our visit to her house,
4
she mentioned that when she
was 2 years old she would not
talk, and i realized that there was
something different from my first
child. After many examinations,
they didn’t tell me she was autistic entirely, because only
Belkina’ father, a very family oriented and sensitive man, seeing
Belkina’s behavior, realized that
in public places she would be
prejudged and misunderstood.
With a very calm voice he says:
“Having a kid with such problems, makes me feel like a have
huge problems, related to the
world that surrounds us. There
is a lack of understanding of this
condition, and the world makes
me feel uncomfortable. It could
be in a bus, in a coffee shop, or
even at school, I mean in public
places and something that your
daughters does doesn’t go unnoticed in the eyes of others and
people’s reactions are bad.”
After a long series of visits to
various centers, diagnosis and
analysis during one year, Belkisa was diagnosed with: Autism
Disorder Spectrum. Her parents, her family and even the society were not familiar with this
term. Even the white coats had
just started to become familiar.
The “Fly for life” Center, opened
in Tirana from the Albanian Children Foundation became a window of hope for Belkisa’s parents.
Very emotional, she interrupts
her story, and is eager to show
her gratitude for the support
and contribute that Ms. Liri Berisha has shown. She says: “She
became the reason that our
hzanosreP - irotsiH
Belkisa with her therapist at the “Regional Center for Autism” in Farke.
daughter has started therapy
and is here today. And i would
like to thank from the bottom of
my heart for Landa. I can’t find
the right words now but she has
done a stupendous job.”
Gëzimi dad:
Thanks to an intensive and careful work for three consecutive
years at the “Fly for life” center
and at the Regional Center for
Autism, in Farke, Belkisa has
surprised everybody with her
change in behavior and communication. The biggest surprise happened in September,
more exactly the 10th of September when Belkisa, just like
her peers, wore a backpack and
went to the first grade at Nobel,
a private school.
related to the world that surrounds us.
A very emotional father remember his daughter’s first day at
school:
“ Having a kid with such problems, makes
me feel like a have huge problems,
There is a lack of understanding of this
condition, and the world makes me feel
uncomfortable. It could be in a bus, in a
coffee shop, or even at school, I mean
in public places and something that your
daughters does doesn’t go unnoticed in
the eyes of others and people’s reactions
are bad.”
5
Valmira mom:
“I have no words.
I don’t know. I am
very happy we
reached this day. I
wish all the parents
in our position
to experience
such joy, such
happiness, And
I hope all kids
with these kind
of problems to
improve, just like
Belkisa did.”
Belkisa’s first steps.
Gëzimi dad:
“I was very
excited that
day. It was a
very exciting
day. I would
stay distant. I
would look at her
interact with other
kids. I prayed to
God.”
6
“I was very excited that day. It
was a very exciting day. I would
stay distant. I would look at her
interact with other kids. I prayed
to God.” Then he starts to cry
and cannot talk. Valmira gives
him a kiss on his cheek, and very
pleasurably continues her story:
“I have no words. I don’t know. I
am very happy we reached this
day. I wish all the parents in our
position to experience such joy,
such happiness, And I hope all
kids with these kind of problems
to improve, just like Belkisa did.”
The presence of an autistic child
in the classroom was a new experience even for the teacher of
Belkisa, Merita. This school, on
behalf of an exemplary school,
took upon the responsibility to
use differentiated treatment for
Belkisa and at the same time
undergoing itself a process of
acknowledging the phenomenon that this girl represents.
“The first thing that I asked from
the parents was to bring a book,
through which I could better
understand how to treat her. I
have just started to read this
book. She is a very smart kid,
and she has been distinguished
not only in the classroom but at
the school level also. The entire
school knows about her.”
Landa is Bellkisa’s therapist
at the Regional Center for the
Autism in Farka. For more than
three years she has been working daily with Belkisa, and she
was the first to announce the
good news to her parents; that
she was starting school. “If I go
back to my thoughts and emotions of three years ago, this is
incredible even for me”.
What Belkisa learned though her
therapy at the Regional Center
for the Autism in Farka was not
just a preparatory phase for the
preschoolers. The intelligence of
the girl in combination with the
therapist’s work, resulted to be
a surprise even for the teacher.
The book that the Albanian Children Foundation brought with
such devotion “Autism in the
classroom” was a key element
that helped Belkisa’s teacher
to learn the necessary ways of
communication with her. This
new progress raised a more optimistic perspective for Belkisa.
Belkisa’s improvement resulted
in her sister feeling she not only
gained back her sister, but also
a friend. “She has improved
veeeeeeeeryyyy much in comparison with her previous situation; she is nicer now, sweeter;
she is different; she talks better, she is more approachable.
When mom and dad go out,
she doesn’t cry anymore as she
used to; so … she has changed
so much. Now that she has improved, I don’t have just a sister,
but for me Belkisa counts for a
100 sisters and a 100 friends.”
– Selma says with a smile in her
face.
The work of the Foundation is
not limited just to the children
that are sheltered to the Regional Center for the Autism in Farka
ot the center “Fly for Life”. An
ambitious project that started
two years ago, that made possible the training of some GPs
of the health care centers in Tirana on the early detection of
Autism to the children of 16 to
24 month old, raised new challenges ahead.
Belkisa with her therapist and her mother Valmira.
Belkisa at the “Regional Center for Autism” in Farke.
Belkisa with her mother Valmira.
Dr. Çollaku, from Health Center
Nr 4, says she discovered 4 new
cases within a year during her
work, and thus it is worth doing
even a million interviews.
Artenca Collaku, physician, Health Center Nr.4 Tirane.
7
“Autism does not define us. We define Autism!”
8
Belkisa’s outbreak with her own power
in the process of formation, the stability
in behavior, the fluent communication
are the results of a hard work not only
from the parents but also from the
specialized staff at the center in Farke.
The
serious
and
visionary
commitment of the center’s
staff has resulted in 11 other
children starting to attend preschool or school. Since 2009,
the Foundation has performed
evaluation visits for 750 cases.
Today, the Center in Farke offers
services to 75 kids, who just like
Belkisa are treated with different
therapies and schedules which
translate into 100 work hours/
day. 11 other children,
just like Belkisa became
able to adapt in various
schools, equal to others
and not only they made their
families very happy, but this
marks a first cornerstone for success in
the history of the center.
Autism is part of the child, but is not the
child. Belkisa, and all the other children
in Farke are much more than just a
diagnosis. The motto for these children
is:
“Autism does not define us. We define
Autism!”
“She is nicer
now,
sweeter;
Sister
she is different;
she talks better, she is more
approachable. She has changed so much.
Now that she has improved, I don’t have just
a sister, but for me Belkisa counts for a
Selma
100 sisters
and a 100
friends”.
“If I go back to
my thoughts and
emotions of three
years ago, this is
incredible even
for me”.
Landa
Therapist
“She is a very smart
kid, and she has
been distinguished not
only in the classroom
but at the school
level also. The entire
school knows
about her.”
Merita
Teacher
Gëzimi
Fathher
“I was
very excited
that day. It was a very
exciting day. I would stay
distant. I would look
at her interact with
other kids. I prayed
to God.”
Valmira
Mother
“I have no words.
I don’t know. I am
very happy we
reached this day”.
9
Poem
e.
p
o
r
a
s
i
m
Autis
u back.
o
y
g
in
ld
o
H
our mind.
Y
t
a
s
ll
u
p
It
category, "
b
m
u
d
"
e
in th
It puts you
dinary,
r
o
e
th
f
o
t
e ou
You becom
rope.
Autism is a
depths.
s
it
to
in
u
o
Pulling y
ou can do,
Y
g
in
th
o
N
e it.
But embrac
eally does,
r
it
t
a
h
w
knew
If only you
rope.
Autism is a
r mind,
u
o
y
f
o
l
o
tr
Taking con
around you
t
h
g
ti
g
in
p
wrap
,
e its grasps
v
a
le
't
n
a
c
So you
c crew,
ti
s
ti
u
a
e
th
of
You're part
rope.
Autism is a
ull potential,
f
r
u
o
y
g
in
Hid
roam free,
u
o
y
g
in
tt
le
But
thoughts,
u
o
Y
g
in
r
e
Whisp
uld flee.
o
c
u
o
y
g
in
Wish
rope.
Autism is a
This poem was written by a fifteen-year-old girl who has a brother affected by autism.
Source: Autism Speaks, New York
10
Seminar with Primary Health Care physicians on Autism
Children with autism:
A challenge for Public Health and
society.
Dr. Liri Berisha at the Seminar with Primary Health
Care physicians on Autism in various districts.
"The purpose of this workshop was to influence on key stakeholders
of the health system of the cities to strengthen the capacity of this
system in the early identification; support for families of children with
autism spectrum problems; and the role of pediatricians and those
of consultancies in facing this challenge".
F
ramework of World Autism
Awareness Day, designated under by the United Nations
Organization, and on the occasion of publishing in Albanian
the book 'Children with Autism'
of Michael Power, the Albanian Children Foundation and the
Ministry of Health, held today
the workshop: 'Children with
autism: a challenge for Public
Health and Society " at the Regional Center for Autism, Farka.
The purpose of this workshop
was to influence on key stakeholders of the health system of the
cities to strengthen the capacity
of this system in the early identification; support for families of
children with autism spectrum
problems; and the role of pediatricians and those of consultancies in facing this challenge.
The President of Albanian Children Foundation, Mrs. Liri Berisha, said that in recent years there
are made ​​serious efforts to sensitize the general public, professionals, our friends and benevolent
11
“Children with Autism – a challenge to
the public health sector” Seminar.
"Allow me to ask you with humble and love to become
close allies and partners in this initiative, not only in your
positions, but as professionals who have the opportunity to
donate part of your kindness to people in need and those
who suffer. Albanian Children Foundation feels it a duty
to be at your service to support a greater and qualitative
collaboration".
within and outside Albania, to
join forces to help this vulnerable category. "Many positive developments have taken place in
Tirana” - Mrs. Berisha said, “and
others have begun in a few towns
like Elbasan and Fier.
Mrs. Berisha continued:
"Our developments have taken
the attention, encouragement
and evaluation from the most
prestigious organizations in the
field of autism.
But I've always been worried
about something: How to influence to families on remote and
poor areas of the country, because maybe there is the greatest
challenge of our success.
Allow me to ask you with humble
12
and love to become close allies
and partners in this initiative, not
only in your positions, but as professionals who have the opportunity to donate part of your kindness to people in need and those who suffer. Albanian Children
Foundation feels it a duty to be at
your service to support a greater
and qualitative collaboration.
Today, we introduce you the publication of a book in Albanian for
parents. I think that is not simply
the fulfillment of an absence in
the library: it is a wonderful guiding for parents as the need to
be oriented and understand how
to serve the child and his family,
how to work without losing time
for the future of his child.
The book 'Children with Autism'
is a very good book for every
pediatrician, nursery or kindergarten teacher, and other professionals working with autistic
children. Thanks to the support
of Swiss Cooperation Office in
Albania the book is distributed
for free and we would like it was
in every part of the country.
Soon we will start an intensive
trainings program where we will
also use the teleconference equipment installed in this center.
We will need your active cooperation to ensure that all pediatricians or other professionals
have the opportunity to become
part of our activities because we
strongly believe that the power of
knowledge can become our main
weapon. "
Outside view of the Regional Center for Autism” in Farke.
The Minister of Health, Mr. Petrit
Vasili, optimistically considered
the opening of possibilities for
cooperation with the Regional
Centre for Autism as the consolidation of the working model
regarding assessment, diagnosis
and treatment of children with
autism spectrum disorder from
this center, said Minister Mr. Vasili, is avant-garde and parallel to
its more developed counterparts
in Europe.
Albanian Children Foundation
and the Ministry of Health aim to
expand the impact of awareness
campaigns and positive developments in the field of autism
across the country.
"Soon we will start an intensive
trainings program where we
will also use the teleconference
equipment installed in this
center. We will need your active
cooperation to ensure that all
pediatricians or other professionals
have the opportunity to become
part of our activities because we
strongly believe that the power of
knowledge can become our main
weapon. "
13
Global Autism Advocacy Leadership Network New York
New York gathers leaders for global support towards Autism.
Autism Speaks: Autism-Crisis of
Public Health.
New York, the Global Autism Advocacy
Leadership Network meeting.
"The International Networking and collaboration is
essential for producing better and faster results. This
meeting today represents another stage, represents
other future possibilities."
The First International Conference of Global Autism
Advocacy Leadership Network was held in New York,
on April 23-24.
Organizations of different countries around the world
that work in Autism field, brought together in this conference, to discuss the best practices and paths to
strengthen their collaboration confronting autism,
which this year is considered without hesitation as: a
Crisis in Public Health.
With an invitation of Suzanne and Bob Wright, cofounders of Autism Speaks, Albania was represented
in this meeting by Mrs. Liri Berisha, President of Albanian Children Foundation, as the promoter of efforts
done in Albanian for important changes toward Autism. Mrs. Wright, at the beginning of the conference,
14
presented the work of Autism Speaks and in particular
international collaborations, where she emphasized
the efforts and achievements of Albanian Children
Foundation on Autism, and she appraised the commitment and contribution of Mrs. Berisha toward these changes.
Focusing on Autism Mrs. Berisha said: “ Although, Albania, with a short acting history toward this, much
is done toward raising awareness and society sensitizing, building services and introduction of the necessary scientific literature, thanks to the commitment
of the Foundation and the collaboration with Autism
Speaks , but a lot to be done remains ahead.”
“We need to work hard to develop the soft, human and
institutional capacities and capabilities for early iden-
"Although, Albania,
with a short acting
history toward
this, much is done
toward raising
awareness and
society sensitizing,
building services and
introduction of the
necessary scientific
literature, thanks to
the commitment of
the Foundation and
the collaboration
with Autism Speaks ,
but a lot to be done
remains ahead.”
tification and diagnoses, and, most
importantly treatment, education
and social assistance to children
and families in need.”
Mrs. Berisha made a brief presentation of the work and achievements in Albania, and at the end
she said: The International Networking and collaboration is essential
for producing better and faster
results. This meeting today represents another stage, represents
other future possibilities.”
On April 2, World Autism Awareness Day, Autism Speaks- the
world's largest autism advocacy
organization, announced that 1 in
88 of American children are affected by ASD, increasing the incidence of this disorder with 75 %
compared to last decades. These
epidemic figures, according to researches conducted by Harvard
University School of Public Health,
can cost to each family about $ 72
thousand per year to take care for
children showing severe forms of
Autism.
According to researches, this situation which is supposed to be
the same around the world, has
put into motion countries, organizations, scientific research institutes and foundations to find the
proper paths in facing it.
War on Autism
Albania receives positive feedback for
raising awareness.
Andy Shih, Vice President of Autism
Speaks on scientific works
Andy Shih, vice president of Autism Speaks in charge of scientific operations, organizer of this two days meeting, said in the Autism Speaks’ official blog that each of the participating groups from 12 different countries made a presentation of Autism Speaks’ purpose, organization, latest
achievements and also the difficulties with which they face continuously.
People from Aruba, as he mentioned as an example, have 99 different
spoken languages in their little island. This issue clearly makes it difficult
to distribute all the necessary information. In Mexico, for example, 80% of
the population lives in extreme poverty conditions.
In South Africa 47% lives below the normal level of poverty, the unemployment rate goes up to 25% and only 10% of the population pays taxes; therefore there are not sufficient state funds to provide the needed
assistance.
In bigger countries it’s even more difficult to diagnose autism, states Dr.
Shih, it is quite a great challenge because of the lack of qualified doctors
and other service providers. In the Philippines it has been calculated to
have around 600.000 children with autism disorder, but only 10% of them
have been diagnosed, and from this percentage only 2% receive the right
treatment.
Autism Speaks in New York notices that in most of these countries there
has been a remarkable progress.
Albania, states Dr.Shih, has a great awareness campaign and recently
opened a modern facility that offers to diagnose and treat autism.
Every military base in Bangladesh has a school for children with autism,
thanks to the government’s efforts these last two years.
In India, they have translated the diagnosis equipment (with Autism Speaks’ support) and they are carrying out studies for prevalence and also
adult issues.
Last year Japan held a very important conference with Autism Speaks acting as a technical advisor; also their efforts to monitor and assist autism
have the health department’s support.
15
16
The countries and regions participating in the
conference were Albania, Aruba, Bangladesh,
Brazil, Hungary, India, Japan, Mexico, Philippines,
Saudi Arabia, South Africa and USA.
17
Saudi Arabia, where state agencies
and several foundations have invested a lot in researches for autism
and also in creating and improving
existing services in the last couple
of years, they use a special card to
encourage the right approach to
safe healthcare and also offers a
discount for those with this spectrum
Hungary, one of the few countries
in Europe with a Strategic National
Plan for Autism, has 500 schools
for people affected by autism and
12 residential houses for adults
with the same disorder.
Hungary is also starting an employment program and is offering
training for parents between several other sources for different fami-
lies.
If these kinds of efforts are to be
taken seriously worldwide will enable better means to fight and help
with autism disorder. Through these global efforts, all countries are
learning to contribute in conveying
the necessary information in several languages using different communication strategies
Autism – The situation
On April 2, the national Autism Day, the powerful organization “Autism Speaks” updated its estimate
of autism prevalence in the United States to 1 in 88 children which is 75% more than the last decade.
These figures, resembling an epidemic, according to studies from Harvard School of Public Health
can cost up to $ 72.000 per year for each family with a child suffering from a severe form autism.
This situation, which presumably is the same all around the world, has set in motion states,
organizations, scientific research institutes and foundations to find appropriate ways to cope with it.
Albanian club for Autism New York.
Young Albanians in America showing,
Solidarity and volunteer to spread
awereness on Autism.
T
hese people shown in the
picture are the members of
the newest albanian Club in New
York, “Walking for Autism” in the
USA. On the 3rd of June 2011,
these group of students, dressed with the T-shirts of Autism
Speaks and the albanian flag
on their hands placed to form a
puzzle like picture joined the biggest awareness campaign “Walk
Now”, which has taken place in
New York and more then 25.000
people attended.
The young group of albanians joined the 111 members of other big clubs which
were able to collect 1,000 dollars minimum from each club.
The participation of young albanians in this important awareness activity of huge proportions, showed a great deal
18
of solidarism from albanians,
wherever they might be, in these events where everyone is
united for a greater purpose.
“Walk now for Autism Speaks” is
one of the largest national programs for autism which holds the
seal of Autism Speaks for fundraising and awareness and is
organized by all the comunities
in the United States and also in
Canada.
This was all powered by the volunteers, families which have
their loved ones are affected
from autism and different companies and local businesses who
hire people affected from autism.
This sucessful effort for fundraising not only generates essential
funds for studying the causes of
autism but also raises a general
awareness related to the incre-
ase in number of people affected from it and future increse in
fundraising for further research
to fight this complex disorder.
According to ‘Autism Speaks’ the
main purpose of these massive
marches is the collection of 1.2
million dollars which will further
help to finance the essential and
promising researches for autism
and the increase in advocacy and
insurance in family servi"On
ces.
the 3rd of June
2011, these group of
students, dressed with the
T-shirts of Autism Speaks and
the albanian flag on their hands
placed to form a puzzle like
picture joined the biggest
awareness campaign
“Walk Now"
Young people from the Albanian Club for Autism in New York.
19
June 1st in Farka:
June 1st in Farka:
“Together we grow stronger!”
Dr.Liri Berisha
“To raise healthy children we should
respect their rights"
T
he festival of June 1st has
gathered together at the Regional Center for Autism in Farka
about 200 children to celebrate
together. This celebration, which
was held on the closure of the
Europe Month, had a special
friend for these children, the ambassador of EU Ettore Sequi.
A giant cake, 10 meter long,
prepared with the image of a
child holding a kite with EU
flag, and with the inscription:
“Together we grow stronger!”
has symbolically conveyed in
the eyes of all those invitees
the place that belongs to these
children in the future: Europe.
Dr. Liri Berisha wishing the
children on this event said:
20 The cutting of the giant cake during the celebrations for June 1st at
the Regional Center for Autism” in Farke.
“This festival comes after a series of activities organized on
the occasion of Europe Month.
The Europe that we aspire is
the place of development and
respect of human rights and especially to children. The Albanian society gives to much love
and attention to its children,
but in order to have healthy
“Dear children. This is the most
beautiful celebration of the International Children’s Day. In
front of this magnificent cake
with this specific symbol. I
wish to all of you all the best in
your life!”
June 1st in Farka:
children we must continue emancipation for children’s rights and respecting them. I want to wish to
all Albanian children Happy June 1st and may every day of your life be filled with joy and blessings!’
The ambassador of EU, Ettore Sequi, praising this festival
as a very special one and wishing children for their day said:
Dear children. This is the most beautiful celebration of the International Children’s Day. In front
of this magnificent cake with this specific symbol. I wish to all of you all the best in your life!”
Children from the Regional Center for Autism, "Zyber
Hallulli" Orphanage, SOS Villages, children of friends
and collaborators of the Albanian Children Foundation
and the surrounding areas where this center is established attended this event.
“This festival comes after a series of activities organized on
the occasion of Europe Month.
The Europe that we aspire is
the place of development and
respect of human rights and
especially to children. The Albanian society gives to much
love and attention to its children, but in order to have
healthy children we must continue emancipation for children’s rights and respecting
them. I want to wish to all Albanian children Happy June
1st and may every day of your
life be filled with joy and blessings!”
The cutting of the giant cake during the celebrations for21
June 1st at the Regional Center for Autism” in Farke.
The Regional Seminar to Respecting Children’s Rights
The Albanian Children Foundation,
Protects children’s rights.
Dr. Liri Berisha and the Polish Ambassador, Irena Tatarzynska,
during a press conference on children’s rights.
Dr. Liri Berisha :
“If we want our country to have decent European citizens, it is
very important that we altogether work hard to emancipate the
society so that children’s rights are respected and protected
every day. Children do not just belong to the families that
raise them; they are part of the entire society where they
will convey, through their contribution as citizens, the spirit
who raised and educated them. Thus, the emancipation of
society, parents and the families towards a new and educated
generation with strong civic principles, is a necessity.”
22
"It is a very good
chance for Albania
to strengthen its
position in promoting
core values, such
as children’s rights
now that it holds the
Chairmanship of the
Committee of Ministers
of the Council of
Europe".
Dr. Liri Berisha
at the regional seminar on Respecting the Children’s Rights.
A
longside New York, Paris,
Strasbourg, Vienna, Geneva
and Beijing, the city of Tirana
was chosen as one of the locations hosting an activity promoting and defending the rights of
children in honor of the great
polish humanitarian and pediatrician, the late Dr. Janusz Korc-
zak… The initiator of such event
was the Polish ambassador in
Albania Mrs. Irena Tatarzynska.
Under the special care of Dr. Liri
Berisha, President of the Albanian Children Foundation and
with the support of her diplomat
colleagues from the other seven
important cities of the world,
MRs. Tatarzynska brought Poland in our country.
Dr. Liri Berisha :
“If we want our country to have
decent European citizens, it is
very important that we altogether work hard to emancipate the
society so that children’s rights
are respected and protected
Regional Seminar on Respecting the
Children’s Rights.
23
Dr. Liri Berisha and the Polish Ambassador, Irena TatarzYnska,
during a press conference on children’s rights.
every day. Children do not just
belong to the families that raise
them; they are part of the entire
society where they will convey,
through their contribution as citizens, the spirit who raised and
educated them. Thus, the emancipation of society, parents and
the families towards a new and
educated generation with strong
civic principles, is a necessity.”
The Polish Ambassador, Mrs.
Irena Tatarzynska:
“We have worked with the Albanian authorities to launch the regional seminar on the children’s
rights one day before the National Children’s day. This activity commemorates the heritage
of Dr. Janusz Korczak whose
work remains an inspiration and
an important contribution to the
Convention of the Rights of the
Child. It is a very good chance
Speaker of the Parliament, Ms. Jozefina Topalli at the regional seminar
on Respecting the Children’s Rights.
24
for Albania to strengthen its position in promoting core values,
such as children’s rights now
that it holds the Chairmanship
of the Committee of Ministers of
the Council of Europe.
The Regional Seminar held in
June 14-15, 2012 brought in Tirana many groups of children’s
rights activists from Southeast
Europe. The President of the Albanian Children Foundation, Dr.
Liri Berisha, the Speaker of the
Parliament, Mrs. Jozefina Topalli, the Minister of Labor and
Social Affairs, Mr. Spiro Ksera,
the Polish Ambassador in Tirana, Mrs. Tatarzinska, and a
representative of the Council of
Europe Office and UNICEF addressed the seminar.
For the first time, this seminar was able to bring experiences from Eastern European
Countries regarding the field of
children’s rights protection during the transition to democracy
years, and is expected to bring
a strong global commitment
towards the children and their
most sensitive causes such as
protection from violence and
abuse, respecting their rights,
especially those of the vulnerable groups and also creating
the Institution of the Children’s
Advocate as a mechanism to
answer all the unresolved cases.
Dr.Liri Berisha:
Breaking the stigma through
emancipation is the first step
of solving any of our children’s
problems.
“No child must be a victim of
discrimination because of race,
language, faith, nationality or social background, health or disability. The right of children not
to be discriminated does not
mean that all children must be
treated the same way”
I am proud for the work we have
done for breaking the stigma
that the society had on autism.
A couple of years ago, Albanian
families suffered the lack of understanding and services on autism, but even the rigidity of the
society to understand, accept
and integrate these children in
the everyday life. Autism is just
another condition that affect our
kids. So I think that breaking the
stigmas through social emancipation and education is the first
step toward solving any problem
that our children face, to love
and protect, to understand and
respect and above all to help
them not to feel isolated.
"I am proud for
the work we have
done for breaking
the stigma that
the society had on
autism. A couple of
years ago, Albanian
families suffered the
lack of understanding
and services on
autism, but even the
rigidity of the society
to understand,
accept and integrate
these children in
the everyday life.
Autism is just another
condition that affect
our kids".
Krochmalna St, the Orphanage where Korczak worked. He lived in a room in the attic.
25
Who is
Janusz Korczak?
M
Janusz Korczak 1930
aybe in Albania and in the Balkans, only a few
people know about Janusz Korczak, this honored
figure stays belongs to the big Polish Pantheon. 2012
marks the 100th anniversary of his work at the Jewish
orphanage in Poland, where he was a strong activist of
children’s rights. Korczak’s ideas, differed from the traditional educational methods, and recognized that the
key to the relationship with children was communication. At the beginning, as a young educator he only knew
the traditional ways of dealing with children; however he
soon realized that communication was a very important
element and sharing thought with the children was essential. He advised listening to the children, and talk to
them about why they do things and their needs. The
solution is easier when the problem is talked through.
For this reason, during his era, there were some keen
Monument in honour of Janush Korczak in memory of the children.
26
observations and theories that
went beyond the conventional
ways of dealing with children,
and a new concept was created. His child philosophy marks
the beginning of the change in
the educational ways used until
then. Korczak’s death is very a
very tragic moment. On August
6, 1942, he was deported along
with 200 orphans and other educators of the Warsaw orphanage
toward the notorious Treblinka
Extermination Camp.
The Convention of the Rights of
the Child
Almost 65 years later, thanks to
the Polish initiative concerning
the children’s rights, the General Assembly of the UN decided to adopt the Convention
of the Rights of the Child, the
most important children’s rights
document. It was based on the
philosophical and educational
concepts of Dr. Janusz Korczak.
Today the convention is adopted
in 192
"He advised listening
to the children, and
talk to them about
why they do things
and their needs. The
solution is easier
when the problem is
talked through".
Expectations
This seminar is part of the overall agenda for the other seven
capitals in the world, and the conclusions reached in each country
will be the focus of the final international conference that will be
held in Warsaw at the end of the year 2012, thus crowning the
year that was dedicated to the martyrdom. of Janucz Korczak
Success Story
Albanian Children Foundation supports another child for
eyesight recovery.
Florian Kaloshi, regains his sight.
J
anuary 25, would mark a big
deep trauma for Kaloshi family. The only boy among three
sisters, Florian Kaloshi 11 years
old, has been hit in an accident
with a car that was driving him
home from school. The deviation of the car from the road due
to speed and its collision with a
road side pillar caused the opening of "air bag" on Flori’s face
hitting him hard, traumatic for his
eyes. Consequently cataract affected both eyes causing a slight
opacity to one eye and complete
opacity to the other one.
A few days of in-patient at the
Military Hospital soothed the general trauma, but a delicate eye
surgery remained pending due
to inability to perform it.Flori’s
father didn’t lose the hope. As
he encounters, after heard about
the unsparing support that Albanian Children Foundation has
provided to children with various
health problems, decided to address to Doctor Liri Berisha for
support.
- "I found a comfortable place
to send a text message to Dr.
Liri Berisha and began writing
as I felt, as I felt at that moment
"- recounts Avni Kaloshi, Flori’s
father. - "It didn’t took long and
Mrs. Berisha called, personally, telling me not to be worried
and that everything would be resolved. I can not describe what
a relief surrounded me in those
moments. It seemed unbelievable "- says Flori’s father.
27
Immediately, Flori began medical visits at “The International
Eye Clinic”, where the diagnosis
paved the way to intervention,
which according to the vitreoretinal surgeon Nishant Tanea
should not have been delayed after the trauma that was caused.
Dr. Tanea said that the diagnosis
was "Post-Trauma," which had
brought the internal bleeding clot
in the eye and significant retinal
damage. According to him, the
intervention was brief and the
first thing to be done was eliminating blood clotting through
the absorption with solution and
then retina intervention to repair
the sight. In these cases the expectation for sight recovery, according to Dr. Tanea, was up to
70%.
Flori is very courageous and the
team that will perform the intervention is delighted with his
calmness. - "The only thing I
want is the sight recover" - says
Flori just before the beginning of
the intervention.
It took four weeks to see the outcome of intervention, while Flori’s
father and mother were hopeful
through the support given by the
Albanian Children Foundation.
And doctors’ expectations were
certified. Flori’s eyes after 4 weeks were quite different.
- "I see very well. I now read,
write, walk faster by myself and I
don’t need my sisters’ help to do
the homework" – says Flori with
a smiling look and secure voice.
- "I can’t find words. The difference speaks itself. I thank you
very much the foundation and
Mrs.Berisha" -says Avni Kaloshi.
Flori’s case is the 15th which the
Albanian Children Foundation
enables in the field of delicate
eye interventions. Fortunately all
have been success stories and
children’s eyesight has been recovered.
"I found a comfortable place to send a text message
to Dr. Liri Berisha and began writing as I felt, as I
felt at that moment "- recounts Avni Kaloshi, Flori’s
father. - "It didn’t took long and Mrs. Berisha called,
personally, telling me not to be worried and that
everything would be resolved".
Flori with his father, Avni Kaloshi.
28
Florian Kaloshi, the child
Flori entering the surger
"I see very well. I now
read, write, walk faster by
myself and I don’t need
my sisters’ help to do the
homework"...
with the injured eye, during his theapy at the “International” Eye Clinic.
ry room.
Dr. Nishant Tanea. During the Flori’s eye surgery.
29
Thalassemia
The Foundation built the bridge of communication between
Oncohematology pediatricians of
the “Saint Anna” children hospital
in Vienna, Austria and those in the
Mother Teresa University Hospital
Center in Tirana.
T
he Foundation built the bridge of communication between oncohematology pediatricians
of the “Saint Anna” children hospital in Vienna, Austria and those in the Mother Teresa University Hospital Center in Tirana.
On the occasion of World Thalassemia Day, the Albanian Children
Foundation brought together in
Tirana in a scientific symposium,
the best Onco-hematology physicians of St. Anna Children’s Hospital of Vienna, Austria and their
colleagues of University Hospital
Center “Mother Teresa” in Tirana,
aiming at staring up a bilateral
cooperation for treatment of Albanian children’s patients affects
by blood diseases.
The scientific symposium on Pediatric Oncology and Hematology brought the latest approaches
on onco-hematology morbidity
at childhood, international standards used for their treatment,
strategies followed in their dia-
30
gnosis and treatment, etc.
During her welcoming speech
Dr. Liri Berisha said that Albanian
Children Foundation, with a high
sensitivity toward children affected by blood diseases, was maximal engaged to bring to Tirana
the international experience of
one of the specialized hospitals
in blood treating diseases and
cancer in childhood; the experience of St. Anna in Vienna, Austria which for a couple of decades, in collaboration with other
scientific research centers, has
established a service of the most
specialized standards regarding
diagnosis, treatment and intervention at patients affected by
blood diseases that goes up to
stem cell transplant.
Mrs. Berisha told that Thalassemia was one of the core issues
of foundation’s mission. Since
the beginning of its activity, the
efforts were concentrated in supporting children with this disea-
"Thalassemia
was one of the
core issues of
foundation’s
mission. Since
the beginning
of its activity,
the efforts were
concentrated in
supporting children
with this disease,
contributing in
soothing their life
and parents, closely
collaborating with
zealous physicians
and parent
associations".
Dr. Liri Berisha during the Scientific Symposium on Onco-hematology.
31
“Today, there
exists a total
indifference in
Albanian families
regarding medical
education, while
in many cases
this information
process is not
offered because
of prejudices and
low information”
se, contributing in soothing their
life and parents, closely collaborating with zealous physicians
and parent associations.
Whoever has been careful to follow these developments, notice
that due to continuous efforts of
the foundation, latest years have
seen a progress toward the treatment of Thalassemia patients.
Thanks to Health Insurance Institute which has provided the
reimbursement of medicament
that has changed the life quality
for these children. Putting Deferasirox 250 mg (Ex-jade) in the
list of reimbursement medicaments in 2005, was described as
a” revolution” for the treatment
of this disease. The medicament,
are provided to patients suffering
from Chronic Leukemia Mieloide.
Imatinib reimbursement since
2009 in the list of Medicines that
HII covers, thanks to foundation
lobbing, was a progress regarding the treatment of these patients.
Following foundation’s efforts,
there was made possible the
quality improvement of clinic treatment for Thalassemia patients.
At Lushnja Hospital, in cooperation with the Ministry of Health,
was established the second
center for hemoglobinopathies
treatment, equipped with contemporary equipments for screening and laboratory follow-up
of patients with hemoglobinopa-
The Scientific Symposium on Pediatric Onco-hematology at the
Regional Center for Autism” in Farke.
an oral pill taken before blood
transfusion, substituted the traumatic 24 hours Desferal infusion.
The data of Health Insurance Institute for reimbursement of this
medicament shows that we have
an increase of 50 patients compared to 2007. Actually, there are
about 156 patients treated with
this medicament.
Facilities, added Mrs. Berisha,
32
thies. Through these equipment,
Lushnja center provide services
not only for its citizens but also
for all south region.
In parallel, the foundation has
been working hard for Thalassemia awareness campaign
especially for blood donation.
“: Health Service reform, - said
Mrs. Berisha,- due to favorable
During the Scientific Symposium on Pediatric
Onco-hematology.
"Facilities, are provided to patients suffering from Chronic
Leukemia Mieloide. Imatinib reimbursement since 2009 in
the list of Medicines that HII covers, thanks to foundation
lobbing, was a progress regarding the treatment of these
patients".
policies, the interest of health
employees and the huge work
of Thalassemia Association, has
improved lately patients’ treatment. They are reflected in the
average patients’ life spam. So,
before 2000 we had not patient
above 18 year old, while today
we have patients of above 30
year old that are in good health
conditions; they perform normal
activities and have a family.”
Although there are not exact figures, because of population migration, partial screening performed
by Pediatric Research Institute,
shows that Albania still remains
a country with high prevalence of
Thalassemia carrier. It is estimated to be around 7% of the popu-
lation. For this reason, each year,
Clinic Biochemical Lab of UHC
diagnosis about 20 new cases
with hemoglobinopathy.
This situation, underlines Mrs.
Berisha, makes it even bigger
the need of these patients for
frequent and regular blood transfusion. In many cases, patients
with rare blood group can not
be provided with blood transfusion for long period, being so the
cause for severe health complications. This is why, volunteer
blood donation, although improvements thanks to review of law
framework and national strategy
for volunteer blood donation, still
remains a need.
“Today, there exists a total indif-
ference in Albanian families regarding medical education, while
in many cases this information
process is not offered because of
prejudices and low information,
“- added Dr. Berisha.
This symposium came after a
meeting that Mrs. Liri Berisha
had last year at the St. Anna Children’s Hospital in Austria, with
an invitation of Vienna Economic
Forum also following Albanian
Children Foundation efforts for
many years toward treatment of
children affects by Thalassemia.
Physicians, head of departments
of clinical services of UHC, head
of labs and representatives of
private clinics and hospitals in Albania attended this symposium.
33
donation
The Albanian Children Foundation
donates wheelchairs to hospitals in
Tirana.
T
he Albanian Children Foundation has donated 100 wheelchairs to the “Mother Teresa”
University Hospital Center, to
the “Shefqet Ndroqi” hospital in
Sauk and to the Military Hospital.
This donation supported the clinical services of these hospitals
by enabling more patients who
cannot walk on their own to be
transported within the hospital
campus.
In numbers, the Albanian Children Foundation donated 50
wheelchairs to the “Mother Teresa” University Hospital Center for
the new Emergency Department
of the New Hospital, the Infectious Disease Hospital, the Psychiatry Hospital, the ORL Hospital, the Pediatric Ward, the Intensive Care Unit, and other wards
such the Cardiology, Hematology
and Oncology.
Bedri Mihaj: “We treat patients with
serious damages, especially to the spinal
cord, head, brain, extremities that are
often very difficult to rehabilitate. Based
on the scale of invalidity, the patients
seek medical assistance as well as
technical and moral support. One way to
help them is the spontaneous activation
by using the wheelchairs, which helps
them move around by feeling more
independent".
The director of the “Mother Teresa” University Hospital Center,
Mr. Saimir Ivziku, in the name of
the institute he directs, thanked
the Albanian Children Foundation for this and said that it will be
helpful to hundreds of patients in
the emergency care unit.
The foundation donated 30 chairs
to the Military Hospital, mainly for
the Emergency Department and
the cardiac surgery ward where
the needs are the greatest. The
Director of this hospital, Mr. Bedri
Mihaj said that this kind of help
is very helpful to the hospital. He
also said:
“We treat patients with serious
34
During the donation of the wheelchairs to QSUT.
During t
Charity
damages, especially to the spinal cord, head, brain, extremities
that are often very difficult to rehabilitate. Based on the scale of
invalidity, the patients seek medical assistance as well as technical and moral support. One way
to help them is the spontaneous
activation by using the wheelchairs, which helps them move
around by feeling more independent.
The foundation donated 20
wheelchairs to the ‘Shefqet
Ndroqi” University Hospital for
the emergency departments and
other wards in need.
This donation for the hospitals
and the patients with disabilities
is made possible thanks to the
collaboration with the Liahona
Foundation, the Church of Jesus
Christ of Latter-day Saints from
the United States of America.
Two years ago the Albanian Children Foundation started donated
150 wheelchairs to those with
disabilities of various ages. Ms.
Liri Berisha ensures that the humanitarian mission of the Foundation which is to help and support health services for the patients will continue in the future.
the donation of the wheelchairs to the
Military Hospital.
The Albanian Children Foundation helps the
paraplegic and the quadriplegic.
In the last 2 years, 150
wheelchairs donated.
P
aralyzed at the age of 3 months old due to high temperature, for 14 years he moves with
the help of his parents. His name
is Abdyl Cani, a paraplegic admitted at the Pediatric ward at
the Mother Theresa University
Hospital due to health complications.
His mother, Violeta Cani, has
two other kids, and they are luckily healthy. She couldn’t afford
to buy a wheelchair for her son
so he can move on its own, and
after his conditions worsen she
sought help from the Albanian
Children Foundation.
Mrs. Cani met another mother of
a paraplegic child who happened
to be in the same hospital room
as Abdyl’s mother. Violeta tells
how the woman she met told her
about the help se received from
the Albanian Children Foundation
as they donated a wheelchair.
Abdyl’s family lives in Nikel, Fushë Kruja. This is not the only
occasion where a family in need
knocks on the foundation’s door.
Every week, parents and relatives
of sick children from all over the
country receive wheelchairs from
the Foundation. In two years the
Foundation has helped 150 people with disabilities of various
ages. Meanwhile the leaders of
the foundation continue to ensure the mission goes on.
Every week,
parents and relatives of sick children
from all over the country receive wheelchairs from the
Foundation
Violeta Cani, mother of Abdyl Canit receiving a
wheelchair from the Foundation.
35
Charity Ball
“Together for one more smile”.
11 children enter the first grade of
elementary school this year.
“This progress is an achievement and success
of four years working together, an emotion
and happiness that will accompany us in our
commitments and challenges in the future,”
A
lbanian Children Foundation organized the
Charity Gala Dinner, an event that is becoming
a tradition for so many consecutive years. Under
the motto: “Together for one more smile”, Dr. Liri
Berisha, president of the foundation, delivered to
310 invitees participating at this evening, the good
news that 11 children treated for three years from
the “Fly for Life” centers and recently by the Regional Center for Autism in Farka, have entered the
first grade of elementary school.
“This progress is an achievement and success of
four years working together, an emotion and happiness that will accompany us in our commitments
and challenges in the future,”- said Dr. Liri Berisha
in her greeting speech.
36
Further Mr. Berisha made a summary of the activities that the Albanian Children Foundation has organized during this year, mentioning the continuity of
the fruitful partnership with Autism Speaks in New
York, which this year considered the GAPH-Albania
program (Global Autism Public Health initiative) as
the most successful international cooperation. “The
foundation” - Mr. Berisha said,- “this year, in April,
became member of Global Autism Advocacy Leadership Network, while 2 weeks ago in New York ,
at the annual meeting on autism organized by Autism Speaks, with the participation of global distinguished personalities and figures, Albania was presented as a success model to be followed by other
countries.
Charity Gala Night.
Moderator Ardit Gjebrea and Soprano Ramona
Tullumani during the Charity Gala Night.
Domenick Scaglione,
founder of the Albanian Children Foundation.
Children opening the Charity Gala Night.
Pamje nga hyrja kryesore e Qendrës Rajonale për Autizmin
37
"For the first time in the
region, the foundation
has obtained the
first packages of
ADOS instrument
through which can
be diagnosed all the
problems of children’s
mental health".
38
Mrs. Berisha, further, announced another good
news toward diagnosing the problems of children’s
development:
-For the first time in the region, the foundation has
obtained the first packages of ADOS instrument
through which can be diagnosed all the problems
of children’s mental health.
Mr. Domenick Scaglione, the founder, greeted the
participants and he thanked Mrs. Liri Berisha for
her commitment and huge work that she is doing toward Albanian children in need and that this
work should me multiplied and the model of Regional Center for Autism should be spread all over
the country, and the collaborators’ support of the
foundation should be congratulated for all of this.
The evening culminated with the documentary
screening entitled:
“Belkisa: I entered school… Thank you! about a six
year old girl with autism, which after four years of
therapy by the foundation, this year began the first
grade of elementary school? The documentary de-
Charity Gala Night, view of the hall.
livered the indescribable emotions of Belkisa’s parents that tearfully in joy for this development in their
child’s life, wished from the bottom of their heart
other children have the same good luck of Belkisa
and thanked the foundation for this extraordinary
work for the rehabilitation of their daughter.
These emotions were followed with the live performance of “I love Albania the most” song by Armaldo
Kllogjeri, international known tenor, who later performed with Ramona Tullumani, soprano, “Granada” and “ Brindisi ”. The soloist Vikena Kamenica
joined them with their prestigious interpretation of
selected operistics interpretation and choreographic performance by Isida Mollaymeri and her partner.
Mr. Bujar Nishani-President of Albania, and his wife,
Mrs. Jozefina Topalli- speaker of the Parliament, Mr.
Lulzim Basha- Mayor of Tirana, Mr. Ilir Meta- Head
of Socialist Movement for Integration, Prince Leka
II Zogu, Mr. Alexander Arvizu-USA ambassador to
Tirana, Mr. Ettore Sequi- European Union ambassador in Albania, Mr. Eugen Wollfarth- ambassador
of OSCE in Albania, head of representatives of international organizations to Tirana such as UNICEF
and UNDP, director of World Bank, representatives
of diplomatic corps in Albania as well close collaborators of the foundation.
An auction with 15 artworks, carefully selected from
the collections of Albanian painters with a known
artistic activity, was organized at the end of this
event.
The incomes of this auction are EUR 544,300 which
will be used for the realization of future projects of
the Foundation.
The Gala evening is an annual event organized by
the foundation. This moment serves to give thanks
to all the collaborators that are making reality this
human mission of the foundation toward helping
children in need and those with development problems or those in need, as well looking forward to
the busy agenda of the Foundation with projects
that need support and provide a better future for
children.
39
dONORS
Acknowledgement and Gratitude to all the donors that
supported us in activities of the Albanian Children Foundation
reflected in this issue.
State of Kuwait
Ministry of Awqaf
and Ismalic Affairs
VKSN
INTESA SAN PAOLO BANK
DINAMO SHA
INTERMED
SEGAFREDO
SUELA REXHA SELMANLLARI
KREL SHPK
BOUTIQUE HOTEL KOTONI
SOCIETE GENERAL ALBANIA
RAIFFEISEN BANK
INTERALBANIAN
SIGAL UNIQA GROUP AUSTRIA
VODAFONE ALBANIA
BALFIN SHPK
INTERSIG SHA
E.H.W. SH.P.K.
BOGA & ASSOCIATES
ATTORNEYS AT LAW
CREDINS BANK SHA
MEDIA 6
TRANS ADRIATIC PIPELINE
CASINO EUROPA
AMADEUS GROUP SHA
MEGATEK
AGRICOLE BANK
DRITA HOXHA
SHPRESA AL
TEUTA DOCI ILIA
LEEZA TIMOSEV
ALLAJBEU-NACI-MALE
SUZANA PREZA
PELLUMB SEFERI
LORITAN PRESPA
40