NEW CASTLE —
Imagine feeling excruciating pain when you wake up each morning.
Same thing when you try to walk down the stairs to start your day — or even attempt a simple task such as gripping a pencil.
Welcome to the world of New Castle native Kyler Rosta.
“During the winter, the pain is a 9 out of 10,” said Rosta, who lives in Florence, Ariz., with his mother, Abbie Brown, her fiancé, Everett Liburd, and his teenage sisters Paige and Hayden Rosta. His father, Paul, and older brother Dalton live in Slippery Rock Township. “On a day-to-day basis, the pain is a 7 out of 10. There are times I can’t walk, because my knees are throbbing. Sometimes, I can’t open things, because my hands hurt. There are days when I can’t get out of bed.”
Kyler’s affliction caused him to give up the sport he loved — wrestling. But rather than give up on athletics all together, the 17-year-old simply took his will to succeed in another direction.
Kyler’s parents noticed that their second-born was having difficulties walking down the stairs each morning. He ultimately would have to drag himself down the steps in order to get to the first floor.
Kyler also had difficulties gripping a pencil or crayons, because his fingers were so swollen.
“It was debilitating to him, because he was in so much pain coming down the stairs,” Brown said. “He had to stay busy. If he didn’t, his joints would lock up on him.”
Yet, Kyler just went about his business each day.
“He would complain about pain once in a while but nothing major,” Paul said. “He’s a very tough kid.”
Kyler’s parents eventually sought out medical advice as his pain continued over the coming weeks and months.
“At first, they told us it was growing pains,” Brown said. “Then, they told us it was rheumatoid arthritis.”
But, it wasn’t until the family mentioned their son had some elasticity to his skin that the doctors came to the conclusion Kyler had Type 3 Ehlers-Danlos Syndrome (EDS).
“They couldn’t diagnose it with blood tests,” Brown said. “They had to do a skin graft from his back. He was so tolerant of all the testing. He’s a tough kid.”
Type 3 Ehlers-Danlos Syndrome causes joint instability and chronic muscle pain. People with the disease experience frequent dislocations with or without force.
“The shock value was tremendous,” said Brown, noting her son can sit Indian-style with his arms crossed and have his hips and shoulders become dislocated. “I’d never heard of it before. You cry for a while and wonder what you’re going to do, but the more you read about it on websites, you realize there’s a light at the end of the tunnel and you can live through it. He’s just going to have a harder road. He has to work out a little harder and make sure there’s no play in his joints. He has to stay on top of it. He won’t let it beat him. That’s for sure.”
“I actually found out about the diagnosis when I was deployed in Iraq,” Paul said. “You never want to hear that your child has a cold, because there’s the ultimate concern about your kids. Fortunately, it’s not life-threatening.”