I-Team: Confusion delays help for man with rare disease - 8 News NOW

I-Team: Confusion delays help for man with rare disease

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LAS VEGAS --  A young Las Vegas man with a rare and potentially deadly disease is getting help from 8 News NOW viewers. However,  confusion between state agencies means that coordinated help may come too late to keep this man and his family off the streets.

Acar're McCombs medical condition is about as rare as it gets. It's called diffuse cutaneous systemic mastocytosis. His skin and organ tissues become painfully inflamed with the potential for death if he's exposed to sunlight, unfiltered water and most things non-organic.

The Buffalo Soldier motorcycle club walks into the McCombs' home. In pain, and held up by his mother, McCombs thanks his visitors for their help.

Boxes are packed because the McCombs lease on their rental house is done. There's now a race to get McCombs into a new home and a healthier home.

"The ultraviolet rays, the water, the paints and the carpet can all have one thing in common where they'd burn up my skin, be it on contact or they would seep inside and do so," McCombs said.

The I-Team became aware of McCombs' plight through state health officials. McCombs, who is now 18 and considered an adult, was in danger of falling through the gaps in state assistance. The state's help is split between multiple sources creating an alphabet soup of confusion. The agencies involved include: Aging and Disability Services, the Department of Health and Human services, the Governor's Office on Consumer Health Assistance, the MFP grant program and the Public Health Foundation.

Anonymous donors tell the I-Team the lack of any single agency coordinating aid efforts is harming their efforts to raise money and help the family. 8 News NOW viewer and property manager Barbara Chess watched Acar're McCombs' story and decided to help. She arranged to find a rental home that could be healthier for him but the family won't be able to move in right away.

"We have some people we're getting bids for taking out all the carpet. They're going to put in hardwood floors. It's going to basically not hold a lot of germs for him," Chess said.

The home in Rhodes Ranch has five bedrooms. That's a big house, but considering McCombs needs to wear a full body suit to go outside even a big house is a prison of sorts. And there is a heavy sacrifice with the new house. McCombs' mother won't be able to live there with her son. His cousin will stay in the new house. McCombs' mother can't be on the lease because of her bad credit. Years of medical expenses tend to do that.

"I watch him sleep sometimes and it's going to kill me. He doesn't know. He thinks I'm coming to that home," said Traci McCombs, Acar're's mother.

Despite obstacles, Acar're McCombs remains hopeful about his future.

"I still have ability to do everything I set out for myself to do," he said.

The Buffalo Soldier motorcycle club leaves the McCombs family for now but not before pledging their support. McCombs asked for a biker nickname. He chose Obsidian saying the black stone reminded him of his personality. Obsidian is volcanic glass -- hard but brittle -- just like Acar're McCombs.

8 News NOW viewers have donated thousands of dollars to the Public Health Foundation in Acar're McCombs' name. State health officials say donations should be sent to that agency.

A check donation can be sent for Acar’re McCombs, to the Nevada Public Health Foundation, 3579 HWY 50, Suite C, Carson City, NV 89701. Please write Acar’re’s name on the check. For more information about the Foundation, please feel free to call the Foundation at (775) 884-0392, or visit their website: www.nphf.org.

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