LAKELAND, Fla. — Jessica Criss spends most of her day making sure her 9-year-old son Braxton is as comfortable as possible. Three weeks ago, Braxton was placed on at-home hospice care.
“Nobody knows how long Braxton has this side of heaven, but to go on hospice, you must have a terminal condition,” Criss said.
Braxton has a rare genetic disease. A mutation of his HNRNPQ gene. It is a neurodegenerative disease with symptoms most similar to juvenile-onset amyotrophic lateral sclerosis (ALS).
“Braxton is one of 47 in the world, and of those 47, he is the most complex case they’ve seen,” said Criss.
The illness is so rare that doctors don't know exactly what it does or how to treat it.
“There’s no treatment for it, so it’s hard. There’s no other parents to talk to and communicate with. It's just challenging,” said Criss.
Braxton is non-verbal but loves lights and music. For his birthday, his family throws a parade in February. His mom is now working with Make-A-Wish to hold a larger-than-life parade for Braxton even sooner.
“Wishes like Braxton’s are so unique, and we love when we really see a car parade like this and the community rally behind it,” said Kelsea Hauck, Make-A-Wish Vice President of Marketing and Community Engagement.
The parade is set for Saturday at 8:30 a.m., starting at Harvey's Supermarket on US 92 in Lakeland. The community is asked to come help put a smile on Braxton’s face.
“This is what brings him the absolute most joy. Every time we’ve done it every year, he just lights up, and it’s the happiest you see him,” Criss said.
