Subj: My Sister & Apert's Syndrome
Date: 96-01-28 15:18:14 EST
From: WENDY S Q PAK
To: CatNDon@aol.comHello there! My name is Wendy Pak and I am writing to you about my sister
Jeany who has Apert's Syndrome. It is a long story as to why I am now searching
for other people who have Apert's or relatives of those with Apert's, but
I'm glad I did.
My sister is 24 years old (June 11, 1971) and I am 26 years old.
I have been in a sense looking after my sister's affairs since I was in
high school. My parents are now seniors and I felt I should step in and
help out. My parents are originally from China and came to Canada in 1954
(Dad) and 1963 (Mom) I think . My sister and I were born in Canada, Thunder
Bay, Ontario to be exact. My mom had my sister when she was 40 or 41. There
are a total of 6 kids in the family. She is the only one in the family
with Apert's to my knowledge, although I don't know too much about my family
history. Since I am now more educated, it is easier for me to handle and
understand my sister's affairs. I think my sister really needs to know
that there are other people like her around. I think my parents met or
saw another child with Apert's when they were in Toronto for one of many
of Jeany's operations so I know there are others that exist. One of my
reasons for my search of others is for my sister's self-esteem and knowledge
as well as for myself. I want to know how others have handled everyday
life with people with Aperts and if they are similar to my sister. At the
age of 18 my sister chose to leave our family and move into a family home
care program. Basically she lives with another family and pays room and
board while in return the family is to provide love, support, independence
education etc. I feel she is not getting everything she needs. My sister
also has a history of behaviour problems (e.g. jealousy, temper tantrums
etc). On the good side, she is very high functioning, almost normal to
me. She went to various schools when she was young and was place in special
education classes - mostly kids with Down's syndrome. She eventually went
to a technical high school where students with special needs and learning
disabilities attended. She graduated with the highest average in her class
and received many awards. I find the skills she learned in school are now
getting worse because she is not using them everday - for example basic
math. She is now taking a remedial math course to get her back on track.
Are there other adults like Jeany? What are there successes, ups &
downs? We'd like to know.
My sister does like writing so I will have to let her know about
the pen pals. It might help her self esteem. Anyways, I wanted to find
others with Apert's in Canada, but the U.S. is a good start. Are we the
first Canadians you have heard from? I will have to get my sister to the
computer lab and let her see all this interesting stuff. Anyways I will
stop being long winded now. Hope to hear from you soon.
P.S. If anyone knows about other Canadians with Apert's or support
groups etc. I'm sure my sister and I as well as her social worker would
be quite interested.
Thanks for listening (reading) and congratulations on creating
a home page. Take care.