Madilynn Shaffer quickly went from being a bubbly and upbeat toddler to not being able to walk or talk.
“To see her going from an active child to laying in a hospital bed is the most hopeless feeling any parent could go through,” her father Thomas Shaffer, of Harrison County, West Virginia, told CBS affiliate WDTV.
She started to act sick in January, said Thomas, and a few days later she had a seizure and weak breathing. Doctors diagnosed her with ADEM, a widespread attack of inflammation in the brain and spinal cord, according to the National Institute of Neurological Disorders and Stroke.
The long-term prognosis is generally favorable and most will recover, according to the institute, but others have “mild to moderate lifelong impairment ranging from cognitive difficulties, weakness, loss of vision, or numbness.”
After the diagnosis, Thomas had a feeling that there was more to it.
“I started doing some research and doing Google doctor, which everyone tells you not to do. However I did it, and a lot of the symptoms she was having was this ANTI-MOG,” he told the news outlet.
The condition — which has only been diagnosed within the last five years — is an inflammatory demyelinating disease, according to the Mayo Clinic.
“It basically means Madilynn’s immune system is attacking the white matter of her brain,” her mother Stacy Wescott told Connect Bridgeport.
Along with not being able to walk or talk, she can’t sit up on her own and is often in pain. Since January she’s had kidney stones, pneumatosis and broken bones due to high doses of steroids, according to Bridgeport. Physicians think the steroids have made her bones brittle.
“She has so many different issues going on right now: fractures in her spine, broken right wrist, tibia, left foot and sternum,” Wescott added.
As Wescott stays with Madilynn as she is treated at the Children’s Hospital of Philadelphia, Thomas continues to work during the week. They’re both hopeful that their daughter will regain everything she’s lost, reports WDTV.
They’re also determined to speak out — and motivate people to get the answers they deserve.
“You’ve got to be out there and telling people to do all the tests you can do. Don’t settle for one or two. Push the medical field and make them do the testing,” he told WDTV. “For me this has been hell on Earth.”
https://people.com/human-interest/toddler-battles-rare-disease-unable-walk-or-talk/
See: https://childnervoussystem.blogspot.com/2020/12/mog-antibody-disease-differs-for.html
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