April 29 Fundraiser to Support Local 25 Family Member With Angelman Syndrome
Raffle, event proceeds to benefit family’s medical expenses, support Angelman Syndrome Foundation
ROCK ISLAND, Illinois (April 2017) — Like most kids his age, 6-year-old Brayden Ferguson is a happy child.
“Very rarely will you see him upset. He’s always happy, always smiling,” said John Starcevich, Brayden’s grandfather.
But unlike his peers, Brayden suffers from walking and balance disorders, speech impairment, developmental delays, seizures and other symptoms associated with Angelman Syndrome (AS). According to Angelman.org, AS is a genetic disorder caused by abnormal function of the gene UBE3A, located within a small region (q11-q13) on chromosome #15. It affects approximately one in every 15,000 live births, and often goes undiagnosed or misdiagnosed as cerebral palsy or autism.
“Probably before he was one, we knew something was wrong,” Starcevich said. “It affects his motor skills. He doesn’t speak. He walks, but he’s not real stable. He says ‘mama,’ and that’s the only word he knows.”
Medical professionals in the Quad Cities weren’t sure what to make of Brayden’s condition, as there are only two other families in the area with Angelman children. It was pure chance that Brayden’s mother, Amy Fisher, heard about a specialist in Peoria two years ago. At just four years old, Brayden underwent genetic testing for AS, which resulted in his official diagnosis.
Initial efforts in diagnosis, care and treatment came as a result of the work of Dr. Harry Angelman in 1965. Although there is no cure for AS, treatment can include medication to control seizures, behavior therapy to aid in development, physical therapy to help with walking issues and communication therapy.
“He’ll never be on his own, and right now and for the foreseeable future he’s on 24/7 care,” Starcevich said of his grandson. “You can’t leave him alone because he has no fear — he just doesn’t know to be afraid of anything. He doesn’t understand that if you grab something hot, you’re going to get burned.”
To raise awareness about Brayden’s lifelong condition, the family is hosting an Angelman Syndrome Awareness Fundraiser from 1-6 p.m. this Saturday, April 29, at Leisure Time Billiards, 845 Avenue of the Cities, East Moline. The event features a bake sale, three-for-$5 tacos, a 50/50 raffle and raffle baskets provided by local businesses. A portion of the proceeds will help defray the cost of Brayden’s medical expenses, with a portion to support the Angelman Syndrome Foundation. Big-ticket raffle items include:
- Two firearms donated by Springfield Armory
- Two rounds of golf for four people, cart included, donated by Fyre Lake Golf Club
- Towable tube donated by Ted’s Boatorama
Starcevich, a fourth-year apprentice at the Plumbers and Pipefitters Local Union 25, is grateful for the tremendous support the event has already received from his colleagues and the community — but ultimately credits his family with what he hopes will be a successful fundraiser on Saturday.
“My daughter-in-law, Amanda Sherwood, has been working on this benefit nonstop. She originally brought up the idea last fall,” Starcevich said. “One thing about the family is they have really rallied around Brayden and Amy, and everybody does everything they can to help out. It’s just amazing how loving and caring our family really is.”
For more information on Saturday’s Angelman Syndrome Awareness Fundraiser, or to make a donation, call Amanda Sherwood at (309) 236-4753.