Jeany's Page

Pictures of Jeany and Family

Subj:   My Sister & Apert's Syndrome

Date:   96-01-28 15:18:14 EST


Hello 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.

 Wendy Pak


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