Christmas came early for five-year-old William MacNeil of Antigonish, N.S. He and his family are taking part in a three minute all-you-can-grab toy dash at a Dartmouth toy store.
William was diagnosed with Pitt Hopkins syndrome at six months old.
“We had genetic testing and that’s what we found out,” says William’s mother, Tiffany MacNeil. “Also, at birth he was diagnosed with hearing impairment so he wears a cochlear implant on one side and a hearing aid on the other.”
Pitt Hopkins is very rare. William is one of only 15 kids in Canada living with the genetic disorder. It typically causes developmental delays, seizures and gastrointestinal issues.
William is non-verbal and can’t sit or walk on his own. Tiffany says that doesn’t stop him and he loves to move.
“He’s in sledge hockey, he’s in the Challenger Baseball program that’s held in our town of Antigonish and he started therapeutic riding over the summer, loves swimming,” says Tiffany. “He also has music therapy. Loves music.”
William was awarded the toy dash by the Starlight Children’s Foundation Canada, an organization dedicated to brightening the lives of seriously ill children and their families.
CEO Brian Bringolf says this particular event is very special.
“The whole experience I think about a dash like this today resonated with me a lot because it’s the whole family that’s really involved,” says Bringolf. “William’s a really, really sick little boy and that obviously takes away from a smooth family dynamic.”
Tiffany says William’s diagnosis came as a shock to her and her husband, Ian. William’s older siblings, Katie and Alex, were both born healthy.
She says they are fortunate to have a strong support system and this amazing opportunity.
“It was pretty overwhelming thinking about coming here, thinking about, you know, being in the spotlight like this, but it was a whole lot of fun.”
