|
|
 |
|
So tell us...
According
to the International RETT Syndrome Association (IRSA) there
are over 3000 reported cases of Rett in the world, with more
than 2000 being in the United States.
Because we are a
"small" group (unlike other Special Needs
organizations), it's difficult to get funding and recognition
for research and other areas which affect the lives of these
girls/women.
My daughter, Dani was diagnosed
with Rett when she was almost 11 years old.
Our
Story with Rett Syndrome
to
read about our journey with Rett.
"RS is most often misdiagnosed as autism, cerebral
palsy or non-specific developmental delay. While many health
professionals may not be familiar with RS, it is a relatively
frequent cause of neurological dysfunction in females. The
prevalence rate in various countries is from 1:10,000 to
1:23,000 live female births.
|
|
  |
|
Mirjana
story
My name is Mirjana; I’m from Belgrade, Yugoslavia. My
dougther Jelena is seven years old, we have usual problems
like all of you have, and we are trying to find AFO
(ankle-foot orthoses) for Jelena. She walks very
difficult, ankle is in bad position, because of
contracture and she practically can’t make a step.
All of you probably know the situation in Yugoslavia,
I’m not in position to find and buy AFO in Europe.
Jelena try it from one other girl whose friend send it
from USA, and she could walk, it’s very comfortable for
her walking (with my assistance). Now, I’m asking - if
someone of you have this AFO which your girl don’t use
anymore, I’ll very appreciate
If you can send me, maybe we could avoid ankle surgery or
even make Jelena’s life easier.
I would like to thank you in advance, and I hope that
someone can help us.
If you think that you can help us, we can send you a photo
of this AFO. Her foot is 6.3’’ long.
|
|
Her,
side
of story
Yvonne's story
calls on professionals to reflect about how they are with
families and people with disabilities. There are tales of
professionals who only want to label and exclude. There are
tales of professionals who listen and stand beside families.
If professionals want to know what their words and acts do to
families and vulnerable people, they should read The Right
To Belong. If they want to know how they can be helpful,
they should read The Right To Belong. This book will
help doctors and social workers, teachers, civil servants, and
politicians understand what it is like to sit on the other
side of the table.
Yvonne's story
is also the story of her parents work with and on behalf of
other families. It is about respecting families and starting
where they are, not where others think they should be. It is
about walking with families, challenging them, and being
challenged by them. The Penners have been active advocates and
supporters of families in Atlantic Canada for three decades.
They have made a difference. We can all learn from them.
|
|
|
|
|
|
|
|
|
|
|
|
 |
|
|
