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Mom fighting daughter's rare epilepsy ends up homeless in Colorado

mcvay family.jpeg
Posted at 10:51 PM, Aug 09, 2019
and last updated 2019-08-10 00:51:59-04

DENVER-- A Texas mother moved her family to Colorado hoping to find help for her 12-year-old who suffers from constant seizures but ended up homeless, living out of their car.

"Last night was great night. We found a nice little spot to sleep, it was open and the windows were open and she loves nature and she could breathe so she was fine and she had five seizures," Kristen McVay said.

Aiden was born with Ohtahara Syndrome which progressed into Lennox-Gastaut Syndrome. Both extremely rare forms of epilepsy that cause multiple seizures a day. Her doctors believe chemicals and fragrances trigger many of those seizures.

"Laundry detergent, soaps, fabric softener. A nurse walked by her once and she seized because she had deodorant on," McVay said.

The family has been living out of their car for months. Finding a home that meets Aidens needs has been a challenge.

"In an apartment you are all smushed in. Somebody could be doing laundry and she is not going to stop seizing until that person stops doing laundry," McVay said.

Aiden is like most 12-year-olds. She likes the outdoors, loves photography and Star Wars. She communicates through her iPad and just wants a normal life.

"She is brilliant, she is doing grade-level work and she is a photographer and she is partially blind," McVay said.

Kristen is a single mom and she quit her teaching job to take care of Aiden full time.

The fresh air and open space in Colorado was attractive for a family that is trying to stay away from chemicals. The biggest reason Kristen chose Colorado is because Medicaid doesn't cover all of Aiden's medical expenses in Texas.

"Texas does not allow parents to be the caregiver but Colorado does and Colorado has lots of forest and Colorado has access to medical marijuana," she said.

They have a GoFundMe account but they're really looking for referrals to find a safe home for Aiden and their family, so they can start a new healthier life.