Rare disease leads to rare friendship

11:48 PM, Mar 3, 2013   |    comments
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KUSA - Shari Solis always believed her daughter to be one in a million. It's just that eleven years into her daughter's life, she never expected a doctor skilled in vascular disease to concur. 

"We get a lot of, 'Why is this happening to me?' And I don't have an answer to that and that's difficult," Shari Solis said on a recent day while sitting on a chair inside the dialysis wing of Children's Hospital.

The precise odds of getting a disease once known as Wegener's Granulomatosis are somewhat incalculable, but when Shaelyn Solis, 11, came down with it, doctors told her parents the odds were likely close to one in a million for a child her age to come down with the disease that inflames the body's blood vessels.

It all makes what happened to Shaelyn at the time of her diagnosis all the more improbable.

Twelve hours prior another child four doors down from Shaelyn's room was diagnosed with the same incredibly rare disease.

Nakayah Isley, 14, says when she first met Shaelyn on that day inside Children's Hospital, there first words were a little awkward. What do you say to someone who has the same incredibly rare and incredibly dangerous disease as you?

Months later, the two are nearly inseparable when they find themselves in the same town. Nakayah lives in Holly, Colorado, but frequently has to visit Denver for doctor visits.

While the disease is incurable, it is also relatively manageable with the right diet and medications. Because the disease impacts blood vessels, it makes certain organs vulnerable to it. In Shaelyn's case, it's her kidneys that are failing.

In Nakayah's case, it's her lungs that are particularly at risk.

"We've kind of had to grow up early," admits Shaelyn. "My last hospital visit, I had a two-hour nosebleed. I lost about half of my blood."

Nakayah is unimpressed.

"My first airplane ride was on a Flight For Life," she says.

The two smile. They know precisely what the other is going through right now.

(KUSA-TV © 2013 Multimedia Holdings Corporation)