“All I ever wanted was to have a family. So, when Joseph was born, it was the beginning of everything. When he was very young, Joseph was always racing ahead of the curve. He said his first word at three and a half months, and he was walking at nine months. But, at age one, he started having some health problems – ear infections, persistent runny nose, a protruding belly – and he started to slip behind on his milestones. It wasn’t until he was four that we learned it was likely a type of mucopolysaccharidosis (MPS). That was when our lives totally changed.
For weeks, I didn’t eat or sleep. I buried myself in research, day and night. I made connections with the Canadian MPS Society. I learned about the eight different types of MPS and how different Joseph’s future could be depending on which type he had.
While we were waiting on test results, someone at MPS Canada noticed that Joseph had the same last name as another family in their network and offered to put us in touch, because these syndromes are hereditary. When I found out that their son had died at age 10, it just tore me apart. And when our results came back, it was confirmed that Joseph had Sanfilippo syndrome, sometimes called childhood Alzheimer’s – the worst of the eight types. I wouldn’t get to see my son grow up.
“For weeks, I didn’t eat or sleep. I buried myself in research, day and night. I made connections with the Canadian MPS Society.”
Through it all, though, Joseph was happier than the day is long. I knew that he had been sent to Earth to teach me something, and I had to learn it. We started going to church together and getting involved with the people there. It’s good to know that we’re not alone, and Joseph truly loves the music at church. I’m a singer, and Joseph is very musical on the drums and the keyboard. He’s lost a lot but he’s never lost his joy, especially his joy in music.
As I work to build awareness for kids with Sanfilippo syndrome, my big message is that you’re never alone, and there are things you can do. Day to day, we’re managing a lot of Joseph’s health with diet. We’ve been told by doctors that whatever we’re doing, we should keep doing it, because Joseph is doing so well. I attribute a lot of that to constantly tweaking his diet.
I’m going to keep doing whatever I can, and I’m not taking anything for granted. I’m grateful for every moment I get with my son and for all the amazing things that happen in my life with him.”
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