A single West Michigan family has lost five people to the same disorder.
It’s called Ehlers-Danlos Syndrome, and the Yasick family knows the damage it can do.
“How about we start with Uncle Steve?” Clara Klap says to her younger brother, Stevie Yasick, as they place flowers at the graves of their family.
“I remember that he would try and play baseball with me, and he would try to make sure that I was never bored and he would always play with me,” Stevie said, speaking of his father.
Stevie was diagnosed with the vascular form of Ehlers-Danlos Syndrome at age five.
“My mom told me that it just makes you weaker than you normally would be,” Stevie said.
“It’s one thing to have an adult. It’s a whole different story when you’re five,” said Clara Klap.
Ehlers-Danlos Syndrome is a rare genetic disorder that eats away at the collagen in your body, destroying arteries and organs.
“I told my whole class in 3rd grade I want people to be very easy with me,” Stevie said. “I didn’t want them to give me knuckle sandwiches or punch or kick me or anything because that could hurt me really bad.”
Stevie’s grandfather, Gene, was the first to pass from the deadly disorder back in 1989, at the age of 48. At that time, Gene had not been diagnosed with Ehlers-Danlos Syndrome. It wasn’t until 2006, when Gene’s son, Steve passed away at the age of 40, the family became aware of the disorder that was killing their loved ones.
In 2010, Stevie’s dad, Tom, died at the age of 42. In 2014 a third son of Gene, Michael, died at 49, and, a few months later, Michael’s son, Christopher, died at just 25 years old.
With vascular Ehlers-Danlos Syndrome, there is a 50 percent chance that someone with it will pass it along to a child if they have one. Stevie was born before the family was made aware they were carrying the deadly disorder.
All five had Vascular Ehlers-Danlos Syndrome, a disease which gets very little attention and funding, and one for which there is no cure or treatment.
“The fact that there aren’t very many resources makes it even that much harder,” Klap said. “They had a lot of life left to live and, because there’s not resources, there’s not answers there’s not much help we are missing them today.”
On Saturday the family is holding its second annual golf outing to raise money and awareness for the disorder. They are fighting for a cure, holding onto hope that one will be found for Stevie.
“It’s just that whole creating hope. Creating some positive out of this horrible situation,” Klap said. “My hope is to see something change in his lifetime and soon. We are doing what we can to raise awareness around here. But it’s a lot bigger than just our family.”
Right now, hope is all they have.
“I really want to find a cure for it. So people who have it I want them to have a cure because it’s not fun having it,” Stevie said.
Saturday’s golf event is full, but the family is asking for help in donating to their foundation. The money goes to help Dr. Hal Dietz, a geneticist at the Johns Hopkins University School of Medicine, research the disease that has killed so many in the Yasick family.