KATY (Covering Katy News)—The Harris County ESD 48 Fire Department is hosting a fundraiser for a 22-month-old boy who needs brain surgery for a rare genetic condition.
Twenty-two month old Tristan will undergo surgery as he battles Sturge Weber Syndrome, a rare condition that causes prolonged seizures. Only 62,000 people have this diagnosis, and Tristan is one of them.
Tristan’s parents work for local fire agencies, and that’s how Harris County ESD 48 Battalion Chief Jason Tharp knows him. Tharp said Tristan is an adventurous little boy who turns two next week.
“I’ve met him a couple of times,” Tharp said. “The most recent time was at a crawfish boil we recently had at the station. We had a great time, but I saw him having one of his major seizures before they left for the evening.”
The non-profit Katy Area Safety Fest, the Community Risk Reduction Division at ESD 48, Extreme Offroad, and Moonshiners Barbecue have teamed up to raise money for Tristan’s surgery. They are hosting a fundraiser from 10 a.m. to 2 p.m. Sunday at Extreme Offroad & Performance, 20235 Katy Fwy.
The event features barbecue plates, a car show, raffle prizes, and a silent auction.
Lia Hales, ESD 48 community relations coordinator, said Sturge Weber Syndrome presents itself as a “port wine stain” birthmark, which in Tristan’s case is on the left side of his face. Most port wine stain birthmarks are harmless. However, people affected can suffer from different neurological symptoms. Tristan suffers from prolonged seizures, cognitive impairment, developmental delays, and permanent muscle weakness, and other issues.
Tristan’s surgery, called a hemispherectomy, will take place this summer. The procedure involves removing or disconnecting half of the brain. The method is rarely performed but is usually successful.
For more information about Tristan, or to donate online, visit the Facebook or the Go Fund Me pages set up in his honor.