Building Isaac Up

Hello and thank you for reading our story. We are the Smiths and our son is Isaac. Isaac is a fun and loving 6-year-old boy - our Superman - whose smile is contagious when he is not in pain. 

Aside from us, his parents, his biggest fan and greatest support is my mother, Antonietta. We live with Isaac’s “Nonna” because we need extra help. Sadly, our house is not adapted to meet Isaac’s needs and we need to do major renovations to make our house accessible. Unfortunately, the health care system funds only go so far. We are kindly asking for your assistance in helping us create a bedroom on the main floor and a fully accessible bathroom. Many of the structural changes are not covered by insurance. Unfortunately, my husband has recently been laid off, and we have no income coming in, making it more difficult for us to make this renovation possible for Isaac. We realize that we need YOUR help. His medical needs do not allow me to work.

A bit more about us:

Like many new parents, I was beyond blessed to have found out that I had become pregnant. When we knew that we were having a boy, we named him Isaac. His name means laughter and although my heart aches, my son is my joy. Little did we know, that although growing beautifully inside of me, we would have a child who was born with severe medical complexities. 

Isaac came into the world fast and strong at 5 pounds, 12 ounces. However, shortly after he was born, something wasn't right - he wasn't able to eat or gain any weight. After many tests, we were informed that he has Hirschsprung's Disease. This disease affects the intestinal tract. To date, he has had surgeries and complex procedures to try and correct the problem but the results were disappointing. We also learned that he has BCAP31, which is a rare genetic disorder. This disease has contributed to his loss of hearing, uncontrollable body movements, psychomotor development, poor head and neck control, and seizures. His milk allergy has contributed to feeding difficulties, which is actually through a G-tube to his stomach. Isaac is wheelchair-bound, needs to be in a stander, needs AFOs, and has a hospital bed. Now that he is bigger and heavier, we need to use a lift for everyone’s safety. This is not the life that I had envisioned for my son.

After being at CHEO for the first 13 months and a half of his life. Isaac came home with us We are followed closely by the complex care team at CHEO, along with multiple specialists at the Children Treatment Centre and his community Paediatrician. The support team at his current school, Thomas D’Arcy McGee is fantastic.  They have all helped with Isaac’s progress including his physiotherapist, occupational therapist, nutritionist, and speech-language pathologist.

How you can help us:

I know that through your generosity, we will be able to more safely care for my precious boy at home so he can have a brighter future. 

We greatly appreciate any amount you are willing to donate, and most importantly, please pray for my beautiful Isaac. 

Jacqueline and Rod Smith