BOSTON (CBS) – Donovan Lindo keeps a signed basketball nearby. He often wears a hat that reads “Purple Friar.” His eyes are those of a hungry fan.
Donovan is 15 years old and he is the Purple Friar of the Providence College Friar basketball team.
“One of the coaches started calling him ‘Purple Friar’ because he would wear purple pants, purple shoes,” said Jen Shattuck, Donovan’s mom.
Donovan wears purple for epilepsy. His mom explained his diagnosis is even more intense.
Two years to the day we met them, March 20, her daughter passed away from the same extremely rare genetic disease.
“He does not know he has Lafora (disease). He just knows he has epilepsy,” said Jen.
Lafora disease presents itself in puberty starting with seizures and quickly progresses to severe dementia. The outcome is not good.
Right now, Donovan has a feeding tube and is in a wheelchair. He experiences seizures throughout the day, and speaking takes time and is limited.
“There’s nothing I can do to help him. There’s nothing anyone can do. It’s all about making memories,” said Jen.
Enter college hoops.
An organization called Team Impact matches very sick children with college teams. Donovan became part of the Providence team last year.
The family even travelled with the Friars to the Big East Championship.
Jen talked about how great it was for Donovan to be there and join the team on the floor to receive the award.
“It was so special. I am going to cry, now. Just having him be a part of that, not knowing if he’ll ever experience that again,” said Jen.
Donovan’s diagnosis came two years ago. One-and-a-half years ago he had to stop attending school in North Attleboro.
Attending Providence College practices and games pulled him back into the world.
“It’s a lot of camaraderie. Everyone focuses on him,” said Jen.
For Donovan, it’s a world where Providence College’s star basketball team knows him as their biggest fan – the Purple Friar.