VIRGINIA BEACH, Va. (WAVY) - 10 On Your Side introduced viewers to Kaden Hartman last week – a nine-year-old with a rare disease called Niemann Pick Type C. His life expectancy is 13 years.
There's an experimental treatment that could help Kaden, and his mom, Kathy Hartman, asked local doctors to try it. Friday, they told her no.
On Friday, 10 On Your Side's Stephanie Harris sat down with an administrator at CHKD who explained the hospitals reasons for saying no. But it's a hard pill to swallow for the Hartman family that refuses to give up.
"It should be a crime for them to say no, we're not going to treat your child," said Kathy Hartman.
She cannot understand how anyone could look at her son and deny him the treatment she believes could save his life.
"It's unbelievable. How can they do that?", she said.
"It creates safety risks that, as an institution, we think are better addressed in centers that can do these kinds of studies," said Dr. Arno Zaritsky.
Zaritsky said while CHKD feels for the family, the hospital is not equipped to handle the treatment the Hartman's have requested.
The treatment involves injections of Cyclodextrin, which is not FDA approved. The National Institutes of Health is currently doing a first-time small-scale study to determine if it's safe.
But safety is secondary for Hartman.
"I don't know, theysaid they wanted to do what's best for him. What's best for him -- to be dead?", Hartman said.
In addition to the government study, several other children, including twins in Nevada, are receiving the treatment through their own doctors. They got special permission from the FDA to use it, and they're reporting success.
The Hartmans wanted CHKD doctors to get that same permission. It requires a lot of paperwork and expertise CHKD says it does not have.
Off camera, a hospital spokesperson explained to WAVY.com that the situation is similar to if a parent were to bring a child inside that needed a heart transplant. They're just not equipped to do that there.
So, what would Dr. Zaritsky do if Kaden was his child?
"I would look to go to a center where they were providing the therapy, if I had the resources to do it," Zaritsky said.
Those centers would be mostly research hospitals and CHKD is not one. A quick internet search shows that the California hospital, where the Nevada twins are treated, is.
CHKD said it will reconsider if the study moves into the next phase, but that will likely be too late for Kaden.
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