(Photos by Dave Cyphert of ProPoint Media Photography)
Trenton Hooks, of Shippenville, turned 15 on Monday, December 14.
That may not seem like a particularly auspicious birthday to some people, but for Trenton, who was diagnosed with Sanfilippo Syndrome in early 2019, it is a big milestone.
According to birthday organizer and long-time family friend Melissa Schill, any birthday beyond 13 is a big deal for someone with Sanfilippo Syndrome.
The condition is a metabolic disorder caused by an enzyme deficiency that affects the metabolism of sugars in such a way that it results in severe damage to the entire body. The lack of an enzyme prevents the body from going through its natural recycling process, causing cellular malfunction, eventually leading to fatal brain damage.
Sanfilippo Syndrome is referred to as a childhood disease because most patients never reach adulthood. It is a progressive, fatal genetic condition that only affects about one in every 70,000 children. The average life expectancy for children with Sanfilippo is just 15 years.
While Trenton’s parents, Jamie and Cory Hooks, usually try to have a big birthday celebration for Trenton each year, due to the current COVID-19 restrictions, a party of the regular kind just wasn’t possible this year.
However, that just didn’t sit right with Schill.
“I was thinking how can we celebrate in a way that’s safe and special and still have other people involved?”
She then came up with the idea of a drive-by birthday.
Schill started by reaching to to her church, Hope Rising Church of Clarion, and asked for help getting the word out. Pastor Harry Hoff then sent out an email and Schill started a group message on Facebook, looking for people to participate.
“It grew very quickly!” Schill noted. “It’s just been a whirlwind the last few days.”
Along with local residents, Schill and others also reached out to local police, fire departments, and more, and those calls were answered.
On Monday evening, the local community turned out in force to help celebrate Trenton’s birthday. Along with many local residents and parishioners of Hope Rising Church, the birthday drive-by parade also included representatives of PennDOT, Clarion Borough Police, the Clarion County Sheriff’s Office, Shippenville-Elk Township Volunteer Fire Department, and Clarion Fire & Hose Company 1.
“It was an amazing turnout and a humbling experience,” Schill said.
