This week is Infantile Spasms Awareness Week, and a Central Michigan University faculty member is bringing awareness to the disease, that can end fatally if left untreated.
Ellen Wehrman was honored this past weekend for her work to raise awareness for infantile spasms.
She runs a blog called Squirmin’ Wehrmans. She launched the platform five years ago when her son Charlie experienced infantile spasms.
Wehrman works at the Leadership Institute at CMU. She says some signs are eyes rolling back, and uncontrollable shaking.
“You have to be really fast, they want treatment to start within 48 hours. It’s really important to catch them quickly, and so the faster you move the faster you can convince a doctor that’s what’s happening, the better.”
Wehrman said she still documents her son’s recovery, and raises awareness of infantile spasms on her blog.
“We just felt like, if we could go back in time we wish somebody would have told a story, a positive story, so we always want to be the person you want in your corner, so we just thought it was important to keep telling a story just to show hope in the face of what could be a really bad prognoses, because you never know how things are going to turn out, and that positivity was really helpful for us.”