I-Team: Young man with rare condition needs help - 8 News NOW

I-Team: Young man with rare condition needs help

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LAS VEGAS -- State of Nevada health officials say they are trying everything they can to help a Las Vegas man who can be seriously hurt by things most people take for granted.

Exposure to sunlight and unfiltered water can kill 18-year-old Acar're McCombs. McCombs has a rare and aggressive form of systemic mastocytosis.

Ultraviolet radiation from the sun, even when it is reflected off the full moon, prevents him from going outside without a full-body suit.

State health officials reached out to the I-Team, hoping the Las Vegas community could help bridge the gap and help this young man.

Acar're McCombs often wears a mask in the comfort of his own room. Comfort may be the wrong word, the drugs on the shelf show pain is always around the corner.

The mask is for his condition, shielding him from the hazards of the outside world, which include sunlight, unfiltered water and most things non-organic.

"That is the label of my name. Systemic mastocytosis. ‘Oh, hey, that's systemic mastocytosis, he has that condition.’ I want to be Acar're. I want to be this writer, this writer that people know, or this animator that people can say, ‘I’ve seen his work.’ McCombs said.

“Bubble boy." That is the label Hollywood has put on Acar're's disease with two movies. However, when people see Acar're in person, they react differently then they did in the theaters.

"It's just blank staring. It's just cold, dead staring," McCombs said.

Acar're was born this way. He almost died three times as a child.

"He makes me keep going," Acar’re’s mother Traci McCombs said.

Traci McCombs doesn't have a job anymore, unless you count caring for her son's condition 24 hours a day, which includes washing her son by bucket with specially filtered water, every day.

"She pains herself to worry so much about me that it hurts her. To have a mother like that is the most amazing feeling in the world," McCombs said.

State health officials say they're working every day to get McCombs help, a more sanitary home, a better suit, a chance to contribute to society.

The McCombs family face losing their rental home July 1. Acar're currently receives Social Security disability funds but there are deep gaps in what state programs provide.

The Nevada Department of Health and Human Services sent the following statement about the McCombs' case:

"For the past several weeks, caring and concerned representatives from federal, state, and local government, and members of the private sector have diligently worked as an informal team to collaborate and identify available resources to address the serious and complex needs of Traci McCombs and her family. During that time, we successfully identified funding and other resources which addressed some of Ms. McCombs’ needs, but many more remain. By July 1, the potential exists that Ms. McCombs will receive additional funding assistance to pay for move-in expenses such as security deposits and first month’s rent, but the family has many more funding needs which are not able to be addressed by government programs. The McCombs family remains in need of additional funding and community resources in order to meet their housing and special medical needs. This is a critical and heart wrenching situation which will certainly take a village, a concerned community, to come together to help this family in need."

"There's a whole bunch of agency help, but if you don't fit the criteria, then they can't help you. So, you're on your own," Traci McCombs said.

Acar're McCombs is really good at video games. Not just playing video games but programming them too.

He is looking to get his driver's license. He may never be able to drive but at least he will know that he has the same status as other young men his age.

"I want people to understand that I'm normal. I want them to understand that I have a specialness that is not in any way, shape or form with my disease that has overshadowed my entire life," McCombs said.

McCombs’ labor of love is his book, which he titled “The End of Forever." It is about a world in an alternate dimension of reality. It is a work of fantasy, written by a man whose life is harshly limited by reality.

McCombs and his family will likely lose their rental house at the end of this month. The state health department is working to find a solution, but they're also hoping the community, perhaps a private foundation, can help.

If you'd like to help Acar're McCombs, contact Mary Woods with the Nevada Department of Health and Human Services. She can be reached at mary.woods@dhhs.nv.gov

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