Staying Positive, Looking Forward in the Face of One of the World’s Rarest Diseases

VICTOR, N.Y. – Three years ago Victor resident Gurnal Jones was diagnosed with the Erdheim-Chester Disease, a very rare sickness that causes an overproduction of a type of white blood cells that can damage all of a person’s organs.

Gurnal’s wife, Julie Jones, says it’s classified as a massive inflammation that acts like cancer.

Gurnal is one of just 200 diagnosed cases in the world.

“It affects every organ in his body,” Julie said. “First it was his heart, then it was his lungs, his abdomen, so when you just see this happening to all these different organs, it’s scary.”

The journey from there hasn’t been easy for Gurnal, especially seven months ago when doctors told his family to prepare for the worst. 

“Back in February is when I got real sick and I almost passed at that point," Gurnal said. "Luckily I bounced back from it.” 

“It’s up and down all the time,” Julie said. “He gets admitted a lot. He was on dialysis; he had renal failure for awhile.”

Despite this rare and difficult disease, his family said there are three things that have helped them through these tough times: courage, hope, and support from friends, as well as the Erdheim-Chester Disease Global Alliance.

“It’s what my mother always said too. She always said, ‘don’t look back, things happen for a reason, just go forward with it and just be as positive as you can,’” Gurnal said. “That’s how I always look at everything. I want people to know, when you get something like this, it’s not the end of the world, not to give up and look forward.”

While they wish by sharing their story they’ll spread awareness about the disease, Gurnal said he also just wants to continue cherishing the special moments he has with his family for as long as he can.

“He’s funny, loving, caring,” Gurnal’s son Aiden, 12, said. “Everybody loves him.”

“He’s a really strong man,” Gurnal’s daughter Lexi, 10, said. “I never knew he could be around this long. He’s done everything to be here. I love my dad. He’s my real hero.”

The family held a fundraiser on Saturday night at O'Laughlin's Silk Resturant in Irondequoit to raise money for awareness, support, education and research for the disease. If you'd like to donate to the Erdheim-Chester Disease Global Alliance through the Jones', click here.

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