Elise's Corner aims to raise $1M to help battle rare Alexander Disease

CLEVELAND, OH (WOIO) - Jenny Bonsky, mother of 6-year-old Elise, recalls the joy of bringing her home from the hospital.

"She was born a completely normal, happy, healthy child," said Jenny.

When little Elise was 1, Jenny and her dad Chris started to notice she was having very short seizures. An MRI found a few abnormalities in her brain.

"We received a phone call, 9 o'clock in the morning from her local neurologist at Akron Children's saying how quickly can you get to the hospital."

Elise was diagnosed with Alexander Disease. The diagnoses knocked her parents for a loop.

"We left that hospital in complete and total despair thinking it was just a waiting game until we lost our child."

"First (the doctors) said: 'Don't Google it.'"

Of course Chris and Jenny did.  What they found was frightening.

"And what it does it will eventually it strips your body from the ability to walk, to run, to write, to use your hands, talk, swallowing and eventually breathe."

Elise's dad and mom decided not to just accept the usual fate of one diagnosed with Alexander Disease.

"So, it's been on us to make that decision of we are going to look at these therapy areas and make sure she's the healthiest, the strongest that she can be to fight off these potential symptoms down the road," said Chris.

The family, including Elise's sister, changed their lives around to do everything they could to save her.

"We do swimming therapy. We do physical, occupational therapy, speech therapy, horse therapy."

They also adjusted her diet and with the help of friend Mike Falen and others, they founded Elise's Corner to fund research and hopefully find a cure.

"We have a real shot here to reach a million dollars to date of funds raised through this effort."

Doctors Amy Waldman, a pediatric clinical neurologist from Children Hospital of Philadelphia, and Albee N=messing, a lead AxD researcher with the University of Wisconsin, Waisman Center, say they're on the verge of a breakthrough to potentially treat Elise and others like her.

They have identified an anti-sense therapy treatment for the disease, and have partnered with a biotech company to take the research to the next level.

Copyright 2017 WOIO. All rights reserved.