VIRGINIA BEACH, Va. (WAVY) - Most parents would go to the ends of the earth to save their children, and that's exactly why a Virginia Beach Mom called 10 On Your Side.
Her son is dying, and there is only one treatment that might stop the disease ravaging his body -- only she can't get it.
The treatment is not a drug, it's a natural sugar compound found in many salad dressings, margarines and even Febreeze. But you can't just spray it on or eat it; it has to be injected, and that's where the family is running into a huge roadblock.
Kaden has an extremely rare genetic disease called Niemann Pick Type C. His body can't process cholesterol. It builds up in his spleen and brain. It is slowly robbing him of the ability to walk, to talk, to live.
"They usually succumb by age 13," his mother Kathy Hartman told WAVY.com. "I feel like I'm this close to helping him, but yet I'm so far."
With time ticking, she is in a race to get her son the only treatment that stands a chance of saving him.
There's something called Cyclodextrin that a handful of Niemann Pick patients are taking. It's a sugar compound found in many foods on supermarket shelves.
A Nevada Mom noticed its ability to break down cholesterol and won Federal approval to get injections for her twin girls who suffer from Niemann Pick Type C. Their disease appears to have stopped in its tracks. Hartman wants to petition the FDA to get it for Kaden, but can't find a doctor willing to do it.
"I don't know if the paperwork is too daunting or they don't want to go to the hospital IRB it's... I don't know," Hartman said.
10 On Your Side tried for two days to get an interview with a doctor or administrator at Children's Hospital of the King's Daughters. Late Thursday afternoon we received this statement:
"Our first priority is Kaden's health and well being and we expressed that to Mrs. Hartman again today. We look forward to meeting with the Hartman family early next week, which was the time frame they requested, to discuss the current situation and what is going on nationally with this treatment. The pediatric specialists who work at CHKD feel strongly that this is the most appropriate forum for discussion of this complex issue."
10 On Your Side Looked into what's going on nationally and here is what we know.
Twin girls in Nevada have been receiving the treatment for nearly four years. Their Mother, Chris Hempel, told WAVY.com her children should be dead. Instead, the girls, who were almost deaf, can hear again. Three other children in the U.S. are also using the treatment. They all got special FDA approval called compassionate use.
The National Institute of Health also started a small study, but it has been put on hold. Two out of three patients got an infection. That is not considered unusual, but they are concerned and said, "we have an extremely high frequency".
Kathy Hartman isn't concerned about that risk. She said the alternative is much worse.
The family and the hospital will meet next week, 10 On Your side has requested to attend.
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