Living a normal life despite a rare disease with little hope

An extremely rare disease left a young boy undersized and underweight. But that boy and his parents are not letting the diagnosis get them down.

Underweight and undersized, the result of an extremely rare disease might sideline the average person. But a young boy and his parents are not letting the diagnosis get them down.

Nine-year-old Brayden Riley is only 44 inches tall and weighs only 40 pounds. But that doesn't stop him from playing one of his favorite sports. Unfortunately, there isn't much known about his condition.

"He actually is the only person in the world to have what he has. It's called CENPF-related ciliopathy. I think there're three other cases in the world that are similar. He was in the hospital for two months before he got to come home; he had the feeding tube in his nose until he was eight months old," says his mother, Miranda Riley.

Brayden’s disease prevents his body from developing normally. Since birth, he's undergone eight surgeries and will undergo his ninth in another week. His parents say growing up wasn't easy.

"Anywhere we'd go people would ask me, is he a dwarf, is he a primordial dwarf, or what's going on with him and then you need feed that baby. I would come home and cry a lot," says his mom.

For the past six years, Brayden has been a member of the local youth baseball association. His father is his baseball coach. He says Brayden is an inspiration to many.

"Gave him the opportunity to do the best he could to show other people that even though you do have challenges in life to still put forth effort and try," says his father, Daniel Riley.

"He may not be a superstar. He's not the absolute best player there is, but in my eyes he is. And I’m proud of everything he does. He's awesome," says Miranda.

The disease is so rare that research to help find therapies or a cure for Brayden may not happen anytime soon. But support and love from his parents make his life as normal as any other young boy.

Copyright 2016 KING


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