Hi, my name is Joe Costa and I am a 13 year old seventh grader at Pelham Memorial School in Pelham, NH. In 2002, my older brother, Tim, started this Sibling Outreach Program, so that siblings of girls with Aicardi Syndrome, had someone close to their age to talk to about having a sister with AS. Tim is twenty three years old now and is graduating from Thomas College in May 2010, so I thought this would be a good time for me to become a part of the Aicardi Syndrome Sibling Outreach Program.
I am the youngest of five children in my family. I enjoy playing soccer, basketball, and lacrosse, and work hard to do well in school. I have been a Challenger Little League buddy the last two years. My best friend has Down Syndrome and he plays on my recreation league basketball team, so I like helping him and his friends out on his baseball team. My oldest sister, Amy, is twenty two years old and was diagnosed with Aicardi Syndrome when she was six weeks old. Aicardi Syndrome is a tough thing to have. Amy has seizures almost every day and is sick a lot. She has a tracheostomy tube in her neck to help her breathe and a feeding tube so she can eat. She has had too many operations for me to count. She has to use a wheelchair to get around and doesn't talk, but we can usually figure out what she wants by the sounds she makes. My other siblings are Tim, age 23, Ricky, age 20, and Laurie, age 18.
I go to the Aicardi Syndrome Family Conferences every other year in July. My mother is always involved in running them, and I really like helping her get ready for them. I help her get the slideshow organized every year. I make signs for the different sessions and do other work to prepare for 80-90 families from around the world. When I go, I love to work in the Aicardi Sibling Childcare room, and I help to keep the brothers and sisters happy while their parents are at the sessions. When I was little, I was sometimes afraid of some of the Aicardi girls, but now that I am older, I just know they are all a little different, and if you take the time to get to know them, you see how special they all are. I love going to the conferences, because I get to see the brothers and sisters of other AS girls who have become my friends after all these years.
Like my brother Tim has said, life for girls with Aicardi Syndrome can be difficult, and it can also be hard for the siblings. I worry about Amy a lot, but I don't want my parents to get upset by telling them that too often. My friend has Down Syndrome but he is really healthy and very high functioning, and my other friends don't have a handicapped sibling, so it's hard for them to understand. I just want any brother or sister of a girl with Aicardi Syndrome to know I'd be glad to e-mail and talk about things. I think it always helps to talk to someone who knows what you're going through, so I am here to listen. Please feel free to e-mail me!
Thanks,
Joe Costa
03-27-2011
