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Raising awareness of rare infant seizure disorder

CMU staff member recognized for her efforts to help parents of children with infantile spasms


Each year, about 2,500 children are diagnosed with infantile spasms — a rare and degenerative form of seizures that cause brain damage. In 2012, Central Michigan University staff member Ellen Wehrman’s nine-month-old son was one of them.

“We knew something was up and, after being sent home from the ER, we captured his seizures on video,” she said. “We got a diagnosis of infantile spasms really fast, which is not normal. For a lot of kids, it can take weeks or months because doctors will write it off or think it’s reflux or something else.”

Wehrman, a student affairs assessment specialist for CMU’s Leadership Institute, had been publishing a blog to stay in touch with family and friends. After the diagnosis, she began posting updates about her family’s experience with the disorder. Through this blog, she has helped families who have children diagnosed with this rare seizure disorder.

“When other parents around the country search Google for infantile spasms, they either get really scary medical stories or they stumble upon my blog,” she said. “I hear from a lot of moms who are scared because the medical prognosis for these children is really bad. It’s a rare condition, and a lot of the kids don’t make it.”

On Dec. 2, Wehrman will receive the 2016 Infantile Spasms Hope Award from a coalition of organizations that lead Infantile Spasms Awareness Week — which takes place Dec. 1 through 7. This award honors a family or individual who demonstrates courage in the face of their child's diagnosis and shares their story to help generate awareness.

“When Charlie was diagnosed, there was no counter narrative to the very grim prognosis that medical websites will tell you,” she said. “We were up against this on our own. I thought, ‘Wow, if I had read something like this about a child going through it, it would have been really powerful.’ We made the choice as a family to be open in public about it.”

Wehrman and her husband, CMU history faculty member Andrew Wehrman, moved to Mount Pleasant last July. She credits the university for its support in this journey.

“What we went through when we lived in Ohio was really hard,” Wehrman. “I was fighting insurance every day. To be in a place that values employees and faculty with such great benefits was an immediate draw for us.”

Ellen Wehrman will spend the first week of December in Houston, raising awareness for infantile spasms through radio and television interviews. She encourages parents who suspect their child may have a disorder such as this to be their child’s champion.

“For parents just hearing about it, it’s rare but it’s serious,” Wehrman said. “Just keep advocating for your kid. Trust your gut. If you think something is wrong, find a second opinion. If the treatment is not working, keep pushing for more. Don’t give up."

Photo credit: Nate Knobel, knobelphotography.com



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