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Hayes, 46, is supporting the Epilepsy Therapy Project. Readers can support Hayes through her fundraising page. Her journey started in 2009, seven months after her son, Eric, was born in March.
She had a complication during pregnancy, and Eric went a short time without oxygen. But he was developing normally when, at 7 months old, started to cry inconsolably. During feeding, Hayes noticed that Eric had a strange movement that looked like a shoulder shrug.
She rushed her son to the emergency room, where Eric was misdiagnosed with an ear infection. When the movements started the next day, Hayes returned to the hospital and begged for an electroencephalogram (EEG) to measure brain activity. The little boy was suffering from Infantile Spasms, a catastrophic and rare infant seizure disorder.
Fortunately, Hayes’ attention helped Eric get the help he needed before his condition worsened. The youngster endured horrifying side effects from an injectable steroid and spent a week battling spasms. Fortunately, there was no brain damage.
After three months, he came off the steroid. He went through physical, occupational and speech therapy three times a week. Eric, who still takes speech therapy, has speech delay, but no other physical problems. “We got extremely lucky,’’ Hayes wrote on her page.
“Unfortunately, most kids do not have an outcome like this. Some cannot walk or talk and are globally delayed.” The other positive development about Eric’s medical ordeal is that it motivated Hayes to resume running. “I started up again when he was 2,’’ Hayes said. “There’s so much stress involved, I just needed to get some of the stress away. Exercise really helps a lot.”
She has run races of all distances up to the 13.1-mile half marathon. Last year, she considered running the New York City Marathon for a charity. When the physician who helped Eric started the Epilepsy Therapy Project, Hayes embraced it.
“I felt like after what happened with Eric that I had a new perspective,’’ Hayes said. “You never know what’s going to happen. I gave myself a bucket list of things I wanted to do. Life is short. If you don’t do what you want, it will pass you by. You have to go for it. As corny as it sounds, you have to grab life.”
The primary motivation for Hayes is to raise awareness of Infantile Spasms. Hayes, whose husband George is a science teacher at Weston Middle School, feels fortunate that Eric will live normally.
“This little boy is a miracle for what he has come through,’’ said Hayes, who has three other sons. “It’s not something you see a lot of. It’s important to get that awareness out there and help other people. The earlier you catch this, the better outcome you will have for your child. It has been such a journey. Now he’s this crazy little 3-year-old boy. I don’t know how I got so lucky.”
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