WEST DES MOINES, Iowa -- Every year the Festival of Trees are donated to families with children who are treated at Blank Children’s Hospital. This year, one tree is going to a West Des Moines boy who is diagnosed with an extremely rare disease.
Just last Christmas, Leo Van Gundy was walking and talking like any three-year-old boy. Now, at four-years-old, he is no longer able to form words or walk independently. Exactly one year ago Tuesday, Leo was diagnosed with Batten disease.
“Initially it’s scary. It wasn’t really hard until we are coming up on this [anniversary] and seeing how much we’ve lost of our son in a year,” Kristin Ballard, Leo’s Mom said.
It’s an extremely rare inherited disorder of the nervous system. Leo’s parents say, basically, their four-year-old son’s brain is deteriorating.
“The regression was so fast that the last time I heard him say daddy I didn’t know it would be the last time,” Travis Van Gundy said. “It was just gone the next day.”
Only seven total cases in Iowa are reported on the Batten Baby Map online. Leo is the only living child in the state.
“Shock, devastating, how do we fix it?” Ballard said.
Unfortunately, there is no cure and the life span for someone with Batten is just 6-12 years old. Making this Christmas tree gift even more special.
“Moments like these are super important for us because we don’t know how long we have,” Ballard said. In-tune with the small joys in life, Leo’s reaction was priceless. “Them coming in and him playing and just being excited it’s amazing seeing that in him. Just seeing the pure joy as a kid.”
The tree’s theme, “Bee Kind,” something Leo’s parents say couldn’t be more fitting.
“To me it also means that Leo has never lost that. He’s never lost his heart. He’s never, with the hand he’s been dealt, let it affect his care and love for everybody,” Van Gundy said. Leo’s father also said the beehives on the tree reminds him of the community and support system behind his son.
Leo was a kid captain at Iowa State’s first home game that was cancelled due to weather. They are hoping to make that up sometime this basketball season.