“As a brother of a child who had Sanfilippo my life was complicated, starting from the beginning of Tony’s life my parents were always busy with him. I had to always find ways to entertain myself and that is what made me close to Tony. As my parents were doing the financial stuff for him I always played with him and treated him as if he was normal like he was like me but couldn’t communicate like I do. I found many ways to talk with him some of which included toys and hand movements. Even though he wasn’t able to move his hands the way I did he talked to me with emotions like smiling and giggling or other signs of how he felt.
Tony and I were like best friends and always close to each other. Whenever my mother took him to the hospital I went with or whenever he had to go to Jacksonville I went with. I always tried to stay at his side. One day I started to realize something like my brother was starting to shake funny. I called my mother into the room and she yelled for my father and told him to call the hospital. I was so terrified of what was happening.
That day made me realize that Tony was starting to slip away. They admitted Tony to the hospital and made him stay there so they could make sure that he wouldn’t have a seizure (at that time I didn’t know that would I thought it was a type of candy or something). They had Tony on many machines like a tube in his stomach called a feeding tube. He also had a button where a smaller tube could go in so that he could get his food in him easier. He used to love ice cream because he didn’t have to have it through a tube. A couple months after he was admitted a doctor came in and told my mother that Tony had a short time to live.
My mother and I both cried and so did my younger brother Christof. They took Tony to another hospital that had dyeing people in it. Tony stayed there for about 3 or 4 months and then he died one night but we didn’t realize it until the morning. When my mother told me I couldn’t cry for some reason it was like the tears couldn’t leave my eyes. I thought it was because I cried so much in the other hospital I couldn’t release any other tears. I held his hand and told him that I loved him and he was the best friend I could ever have. That day I decided that I wanted to become a scientist because I wanted to create a cure for what my brother had and it didn’t matter if there was one already I would make sure I would make a better one. I made it my life goal to help and cure Sanfilippo and I promised it to Tony. He was not just a brother to me he was a best friend who listened to all my problems and in some ways helped me as well”
Many families struggle in a lot of different ways with having a child with Sanfilippo syndrome some families have more than one child affected before they find out they have a second with it also. As a parent that raised a child with Sanfilippo syndrome type a I was 4 days postpartum form having my second child when I found out about my oldest son having this dreadful disease I was told I only had another 3-5 yrs. to spend with him before he was to die of course this sent me into a serious bout of depressive grief I went into shock an stayed that way for about 3 weeks my husband quit his job and took care of me the entire time and the two boys from that episode alone I have post-traumatic stress syndrome.
Luckily my second and third child do not have the disease I cannot say they are not affected by it because they were raised in the same household with their oldest brother that had Sanfilippo syndrome it has altered our entire family life in a multitude of ways some negative some positive from a mothers perspective I feel as I did not have time to raise my second and third son I didn’t have time to be a proper mother I was to busy being a personal care attendant, case manager, advocate, and finally a nurse to my oldest son. It has been 5 years since we have lost the battle with Sanfilippo syndrome type a, we have learned that life goes on no matter how hard it is at times but we have learned so much about each other as a family that most families couldn’t even dream of.
RESOURCES/WORKS CITED
Papalia, D, Olds, S, & Feldman, R. (2009). Human development. New York, NY: McGraw-Hill Higher Education.PRINT Edward Hinkelman. From a younger brothers perspective. Interview. 4/20/2011 McKusick, V.A.: Mendelian Inheritance in Man. A Catalog of Human Genes and Genetic Disorders. Baltimore: Johns Hopkins University Press, 1998 (12th edition).