A West Deer family's daughter is in the fight of her life - their message is simple: "Get tested."

West Deer teenager battling rare disorder looking for bone marrow match

WEST DEER, Pa. (KDKA) - A West Deer Township family is hoping you can help spread an important message: get tested. They say it could help save their daughter.

Thirteen-year-old Caisen Bedillion is a very active teenager. She loves volleyball and being a cheerleader. She also loves makeup. 

"I want to do cosmetology," she said. 

But most of all she loves life, like any kid her age, but she spends more time in a hospital than most. Since birth, Caisen has been sick and has seen specialist after specialist.

"It took a toll, not just psychologically, but physically," said Bill Bedillion. 

It wasn't until she turned 12, with the help of genetic testing, that her family found out what was wrong: dyskeratosis congenita, also known as DKC-1. It's a rare disorder that can lead to developmental delays and blood cancers.

Doctors say it's not a matter of if, but when. Caisen will eventually need a bone marrow transplant.

"It really took us back. I mean, it's scary," said Bill Bedillion. Right now, Caisen doesn't have blood cancer or is in bone marrow failure, but her dad Bill says it could happen at any time.

"We felt helpless, we felt that she doesn't have any signs or symptoms of this now."

And that's why you'll see them at events, benefits, and games to raise awareness. They say the Deer Lakes community has been incredible--but they need more.

They're asking for people to be tested so they can join the donor registry, and hopefully be a match to Caisen.  

"It's as easy as a mouth swab. Q-tip in the mouth. You submit it back and it gets entered in a database."

If you're interested in being tested to find out if you're a match for Caisen, go to this link.

Also, the family will be at the Deer Lakes Youth Football scrimmage in Allison Park on August 10th. It begins at 9 a.m.

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