Local toddler in the fight of her life against rare disease

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HARRISON COUNTY, W.Va (WDTV) - "To see her going from an active child to laying in a hospital bed is the most hopeless feeling any parent could go through," said Thomas Shaffer.

Madilynn Shaffer, an energetic 20-month old girl is who her parents lovingly describe as a 'holy terror'.

"Oh she just ran around the house. It was nothing for her to chase the cats and us around the kitchen ya know?"

But one week in January, Madilynn's health took a turn.

Dad TJ says she started to act ill, and halfway through the week suffered a seizure. By Friday, her breathing wasn't right, and doctors diagnosed her with ADEM, a rare disease that attacks the brain. But TJ thought there was more to his daughter's sickness.

"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 symtpoms she was having was this ANTI-MOG."

This disease has only been diagnosed within the last five years.

Madilynn's immune system is attacking the white matter of her brain. She has been at Children's Hospital of Philadelphia for treatment full time with mom Stacey by her side, while her dad works during the week at Meadowbrook Mall.

"For me this has been hell on Earth."

Madilynn's parents work everyday to help her fight this rare disease, and hope sharing their story will push others to look harder for answers.

"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."

TJ says their road to recovery will be long, and Madilynn may have to learn to walk and talk again after treatments, but they are hopeful for their daughter's future.