Matthew passed away on August 19, 2006, at the age of 15. He is lovingly remembered by his family and friends, and by all who knew him from the Society.
Hello, my name is Matthew. When I was 2 years old I attended a daycare. The supervisor at the daycare told my Mom and Dad that I was speech delayed and very inattentive. This was the beginning of a lengthy search until I was finally diagnosed at the age of 4 years with Sanfilippo Type B Syndrome.
I am much different from those early days of hyperactivity, aggression and long sleepless nights. But through all that, my parents called me “laughing boy” because I was always laughing and getting into some sort of trouble.
I loved looking at Spot books, Sesame Street books, photographs, going to school and to the park. Above all, I loved eating and watching Barney.
I continued to have severe ear infections and colds until I was about 6 years old. Unfortunately, as my health started to improve I started to lose my speech. It was a very slow process that took about a year. My last word was “K” which stands for “Katie”, my little sister. She makes me laugh and smile even now. Although I don’t have any speech left my needs are continually being met, and I somehow get the message across. Actually, I pop my mouth when I’m really happy. I also make a smooching noise when I want attention or more to drink or eat.
I am 9 years old now. I attend school full time and I am integrated into a regular grade 4 classroom for some of the day. I have some really special friends that come and sit with me over the lunch hour and recess. They put on circus shows and draw me great pictures. I have been invited to a few birthday parties which is really cool. I had my own first real birthday party last year and all my friends came. We went swimming, had pizza, played bingo, and they all brought me neat gifts. I feel very lucky to have these special friends.
I have always had special care from great Teachers and Educational Assistants. It takes very patient and caring people to look after all my needs. They feed me, change me, and give me as much exercise as they can to help me to continue to walk. They help to foster friendships and communicate with my parents so that everyone knows what is happening. Every year John XXIII School holds a cupcake sale to raise funds for the Canadian MPS Society. Katie says I’m famous because everyone knows who I am.
We have a lot of people that come into our home to help my Mom and Dad to take of me and give them breaks. I consider these people to be my friends. We go out into the community, we play ball, watch Barney and they feed me my meals.
I am still able to walk but I must have assistance as I have trouble walking on my own. I rely on total personal care, however I am still able to feed myself Cheerios in the morning. I sleep relatively well, I think it’s due to the Tegretol that controls my seizures. I am very quiet and I need lots of prompting and interaction from those around me to keep me stimulated. Most recently my Mom has been investigating Sensory Integration. I love my new fibre optic light and the tube aquarium that has lots of bubbles and bright lights.
I know my Mom and Dad are sad at times, but they are always telling me that I am a gift and that I have taught them things that they would never had had the opportunity to know if it weren’t for me. I think I’m lucky to be able to give this gift.
Written by Rob Di Ilio, Matthew’s Father