The Lucas Family fundraised in the same way as they faced learning of six-year-old Henry’s rare condition: they made lemonade.
Henry turned that family motto — making lemonade out of lemons — into reality at a drink stand on Saturday when the family raised money and awareness for Henry’s condition.
“Henry got one of those little kid experiences that every parent wants their kid to have: the simplicity of a lemonade stand,” his father Geoff said.
Henry has a rare and terminal condition called Sanfilippo Syndrome, a cause of childhood dementia. The roughly $2,300 raised at the stand went toward the Make-A-Wish Foundation, which is at work finding the right dream to grant for Henry.
Another $5,000 raised from other sources, including a dunk tank, will help fund research on his condition at Sainte-Justine University Hospital Centre in Montreal.
The weekend project followed some uncertain times. Geoff said the family was unsure how Henry would be affected in the early months of the pandemic. To be safe, he and Henry’s mother Julie took turns in quarantine with Henry and their respective spouses.
Doctors soon shifted the bulk of appointments to distance calls, leaving less time on the road and more time at home answering questions as the professionals tried to learn more about the rare condition.
“When you got a sick little kid, you pray and hope for time,” Geoff said. “Then you get time, and it may not be the way you were anticipating it.”
Henry also began to miss his peers in his small class of about 10 students. The feeling was mutual, Geoff said, and that bond led one of his teachers to create a special edition of his comic, Auroraman, featuring the superhero explaining Henry’s condition to children at the fictionalized lemonade stand.
Jeff Burton, one of Henry’s teachers and the creator of Auroraman, said Henry was excited to see the specially-made pages before zipping away again on Saturday. By itself, the comic raised $450 while offering an accessible lesson on Henry’s condition for children and adults there.
Julie said the community support felt “wonderful” after recent months brought new complexities in Henry’s treatment. She said it was heartbreaking at first to learn what life would bring her son, but there was always a silver lining.
Henry’s warmth and energy are studies on how to face tough and uncertain times, she said.
“People truly get to learn from him. You don’t have to be angry or cranky in life. You can just enjoy it. Pure enjoyment: that’s what life’s about.”
