Local boy brings awareness to rare diseases through personal battle

Published: Feb. 28, 2014 at 2:59 PM EST
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Joey Holt passing out Histiocytosis information to the FOX19 Newsroom.
Joey Holt passing out Histiocytosis information to the FOX19 Newsroom.

Friday is National Rare Disease Awareness Day and The Xtra is grateful to have on Friday's show a Northern Kentucky boy who is battling a rare illness.

Joey Holt, 12, of Fort Thomas, has Langerhans cell histiocytosis or histio. The disease happens when the body accumulates too many immature Langerhans cells (a type of white blood cell), according to the Histiocytosis Association Inc. The organization says with the disease too many Langerhans cells are produced and build up in certain parts of the body where they can form tumors or damage organs.

In a public announcement, Joey says there is no known cause or cure for the disease that can attack your skin, bone or organs.

When Joey was in the fourth grade, his white blood cells ate away his right hip bone. He underwent a bone graph and spent four months in a wheelchair. Steroid treatment was prescribed. If the disease returns, he says he will go through chemotherapy.

"I suffer from chronic pains that can make me miss days of school at a time," he said.

Joey participates in online support groups and considers himself one of the lucky ones because he does not have to leave the groups to travel far for treatment. He receives care at Cincinnati Children's Hospital, who employs some of the leading Histio doctors around the world.

Joey decided last year that he would become an advocate for his disease and bring awareness of the illness to the Tri-State. He stuffs treat bags with candy and Histio brochures to pass out, he filmed a PSA for the Histio association and wrote a letter to the Fort Thomas Mayor asking February 28 to be recognized as Histiocytosis Day.

Joey says he hopes his love for science will one day help him find a cure for Histiocytosis.

Joey's Mom has a blog that chronicles life with her two children. Check it out here:  http://raising2tweens.wordpress.com/category/lch/

For more information about the disease, visit https://www.histio.org/ .

Here's the web site for National Rare Disease Awareness Day.

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