Friends Rally To Help Mother Battling Rare Disorder

ARVADA, Colo. (CBS4)- Family and friends are hoping to help a local family fighting to overcome some unimaginable circumstances. A rare disorder has left a mother unable to hear and is now threatening her ability to see.

Those closest to the family would like to help her get into an experimental program that could potentially save her vision.

Kelly and Aaron Conley say the sudden change in health started more than two years ago on the way home from a family trip to California.

"I thought I was starting to get car sick and then I was really car sick and then I said, 'Aaron you need to take me to the emergency room,'" Kelly said.

On that day, life as they knew it would change forever.

"I remember distinctly the last time I heard my kid's voices," she said.

It took months before doctors could explain why Kelly went from a healthy 37-year-old to losing her hearing and her ability to walk.

"It's an autoimmune condition and it's called Cogan's Disorder, so I woke up and my balance system had begun deteriorating," she said.

So rare, that less than 200 people in the world have ever received the same diagnosis. It was news that came around the same time the couple learned their third child was on the way.

"Me being the optimist that I am I thought, 'I've got this life growing inside of me, I've got this other child that I'm excited for' and it gave me this like hope and this direction," she said.

Less than six months from returning from their trip to California, Kelly would completely lose her hearing and that hope she felt through pregnancy was suddenly shattered. Two weeks before delivery she would lost her baby.

"I don't understand why it happened… it was so hard," she said.

When most would consider giving up, the Conley's found a way to move forward.

"You have to do it I mean I have to figure out how to walk again I have to figure out how to communicate, I have to figure out how to grieve this baby that I wanted and that I've lost... and so I just keep going," she said.

A few weeks ago, the family would face a new test. Doctors informed Kelly that the headaches and blurry vision she had been experiencing were the result of a rare manifestation of her rare disease and her vision was now deteriorating as well.

"Losing one sense is difficult, if I lost two… I can't lose my sight," she said.

Instead of letting it bring them down, they are turning their focus on getting into an experimental stem cell program, that could potentially stop and reverse some of the damage.

It's a treatment they desperately want to try but friends and family know they can't afford on their own. Instead of letting them give up, they've rallied together online hoping to raise the money needed to help save Kelly's vision.

"To have friends that come out of the woodwork or who have always been there, gives us this sense that we are not alone," Aaron said.

To help the Conley's get into the program you can donate on the GoFundMe page set up for Kelly.