ELBURN – A week before George and Becky Wendel’s baby boy was due, a test showed he had an irregular heartbeat.
A second, more comprehensive test and a cardiologist confirmed there were five tumors on the boy’s heart and 13 on his brain.
The Elburn couple went from an uneventful pregnancy to an emergency C-section and a dire future for their firstborn son, Stone, now 11. He was diagnosed with tuberous sclerosis complex, a genetic abnormality that results in tumors growing on the body’s major organs – eyes, brain, kidneys, heart, skin – and other maladies including developmental disabilities, autism and epilepsy.
But he survived. George, 40 and Becky, 41, are now activists, having raised about $50,000 over the years for research seeking a cure.
This month, George will embark on his most ambitious fundraiser ever, traveling to Tywyn, Wales, to participate in a 14-mile Race Against the Train on Aug. 16. The annual event, now in its 25th year, draws runners from all over the world to follow the route runs alongside the historic Talyllyn Railway on its journey to Abergynolwyn and back.
His goal is twofold: To raise $10,000 toward a cure and to raise awareness of the little-known condition that afflicts one out of 6,000 births, about 50,000 others in the United States and a million worldwide.
“I am always looking for different and unique ways to raise money and awareness of TSC,” George said. “Am I going to beat the train? Realistically, I just want to be able to say I finished the 14-mile race. If Stone can get up every morning and complete tasks we take for granted, I can push my body to its limit.”
Some people with tuberous sclerosis complex live nearly normal lives and are never affected by it. Others die as babies from tumors and seizures. Stone is cognitively delayed at age 5 or 6 and goes to special education. He has autism and takes medication to prevent seizures and help with anxiety.
“It’s a kink in the chromosomes 9 and 16,” George said. “We did testing on ourselves, but it is not in our families. It was a genetic mutation at conception.”
Stone can write his name but otherwise cannot not read or write. He can play video games and sometimes has good memory retention, other times not. He also plays with his younger brother, Ty, 5.
“This has caused him to have autism. Some days when he wakes up, either he lets you into his world for that day or he doesn’t. When he gets nervous, he reverts back to autism,” George said.
Though getting the news right before his birth was difficult, Becky said she was glad to be prepared for what was to come. An annual MRI shows the tumors on his heart have become smaller while those on his brain are the same. So far, Stone has not had any surgeries, but he continues with medication and services to help him cope with being anxious or frightened.
Though the family will not be traveling with George to Wales, Becky praised her husband’s dedication.
“I think it’s incredible,” Becky said. “I’m excited for him. He’s always looking for unique says of creating awareness about TS and to try to raise funds for a cure.”
TSC Alliance President Kari Carlson said research has made tremendous strides in just the past five years. A different use for an immunosuppresant drug reduced tumors in children at Children’s Hospital in Cincinnati in conjunction with the University of Cincinnati.
Research has also shown tuberous sclerosis is the leading genetic cause of epilepsy and autism, she said.
“We’re not sure what happens to the brain, but if we can unravel that mystery, our research will have dramatic implications,” Carlson said.
“The research is amazing,” George said. “If we can find something to help Stone or help a family down the road, we’ll do it.”
If you want to help:
TS Alliance – Race the Train
c/o George Wendel
43w115 Thorndon Ridge Drive
Elburn, IL 60119
• Tuberous Sclerosis Complex Alliance at www.tsalliance.org which links to George Wendel’s fundraising page and to the Chicago area volunteer branch
• Rothberg Institute for Childhood Diseases at www.childhooddiseases.org/
• Race the Train at www.racethetrain.com
Dad races the train to find a cure for son’s illness
Elburn man goes to Wales to race a train, raise money