College Station family aims to find cure for son’s rare condition – feature story on KAGS-TV
Often a journey is marked not by time, but the fear of delving into the unknown.
A local family’s difficult journey into the mystery surrounding their son’s rare condition was marked by challenges and uncertainty. However, they faced those obstacles with an unwavering determination to find an answer.
Katie and Kyle Dolliver describe their son, Ryan, as a happy kid and mostly a typical two-year-old boy.
“But, he has no idea what’s he’s living with. I don’t want him to know,” said Kyle.
When Ryan was a baby, the Dollivers started noticing bruises when he was crawling. Katie was worried, but everyone told her it was normal.
“I kept hearing, ‘he’s a boy, he’s going to bet bruised,” Katie said.
But it wasn’t until last May that Katie noticed the bruising was getting much worse. One night while bathing him, she noticed his spine was suddenly black and blue in five spots.
The journey started the next morning, and for weeks, Ryan saw doctor after doctor and received test after test.
With no diagnosis, they waited 12 agonizing weeks for the results of genetic testing to come back.
On November 1 of last year, they got the call.
Ryan was diagnosed with Vascular Ehler’s Danlos, or vEds for short, a connective tissue disorder that affects the entire body.
“He doesn’t produce collagen which is the protein that holds the vessels and organs together,” Katie explained. “He bruises very easily and any injury could be life-threatening. He could be fine one minute and the next minute fighting for his life,” she added.
That’s when their lives really changed–dreams of football games and hunting trips were a thing of the past.
“As a parent it frightens you,” said Katie. “It also breaks your heart. It’s challenging.”
Kyle and Katie, along with big sister Reagan, had to start over. They got rid of toys that might be dangerous to Ryan, replaced their floors with special padding, and had to say goodbye to beloved pets.
“We had a dog for six years and another dog for three. We had to get rid of them because we couldn’t take the chance of one of them knocking him over,” explained Katie.
Even though they take every precaution, Ryan’s little legs, arms, and face are scattered with bruises. The Dollivers have even been reported to CPS.
“We’ve had several people say ‘Are you sure they’re not beating their kid?” Katie said.
Then, the Dollivers hit another road block. Few medical professionals were familiar with vEDS, and there was very little research available. Multiple trips to the hospital were met with growing frustration.
So, Katie and Kyle started the non-profit called Ryan’s Challenge to fund research and hopefully, one day, find a cure for vEDS.
“I can’t let my son die on me,” Kyle said.
For a family that now plans their vacations around the closest medical facilities, educating not only doctors, but other parents is one of their goals.
“You don’t really know what you’re dealing with,” said Kyle. “If I can help these other children then I’m honored to do that.”
Ryan’s Challenge is only a few months old, but in a short time, they’ve applied for grants and connected with other parents across the world that are working towards the same goal– a cure.
Although many days are still a struggle, the Dollivers treasure every small victory.
“Being able to cherish those moments and enjoy those and soak them in gives a whole new meaning to ‘seize the day,’” said Katie.
That’s what they’ve done along the way on this journey—seizing the day with this happy, resilient little boy who just says “ow” and keeps on running.
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