CARY: Sick Cary child tests positive for rare genetic disorder - WSLS 10 NBC in Roanoke/Lynchburg Va

Sick Cary child tests positive for rare genetic disorder

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Photo provided by "Bring Deklan Home" Facebook page Photo provided by "Bring Deklan Home" Facebook page
CHAPEL HILL, N.C. -

An eight-month-old from Cary who became sick earlier this month with H1N1 flu has also tested positive for Severe Combined Immunodeficiency, according to the child's parents.

Deklan Galvanek has been fighting for his life ever since he got sick. Tests showed Deklan had H1N1, and the family was waiting on results from new tests to see if Deklan has Severe Combined Immunodeficiency.

On Monday the family learned Deklan tested positive for SCID. SCID -- which is commonly known as "bubble boy" disease -- can prevent the body from fighting off an infection such as H1N1.

"His chances of successfully developing an immune system go from 95 percent to 75 percent," said Evan Galvanek, Deklan's father.

Galvanek explained that if Deklan was 3-1/2 months old and healthy, he would have about an 95 percent chance of success with the bone marrow transplant.

"Since he was sick and is 8 months old, he starts at about a 75 percent chance and has an 80 percent chance, of that, 75 percent do not need additional bone marrow transplants," Evan Galvanek said.

Galvanek and Deklan's mother, Jenna, said Deklan was the picture of health until nearly two weeks ago when he became sick from H1N1.

On the Facebook page called "Bring Deklan Home," the Galvaneks have been updating their son's progress. This past weekend, they posted a photo of Deklan without his ventilator. Deklan's father said the 8-month-old has needed almost no oxygen through the breathing tube and is down to just one maintenance medication for his heart rhythm.

But before a bone marrow transplant, Deklan must be healthy and virus free. He will have to have another test soon to see if the H1N1 virus is still present. Once all the virus is gone, Deklan will be transferred to Duke University Medical Center for a bone marrow transplant to treat his SCID. It would be a transplant T cell-depleted haploidentical parental bone marrow stem cells.

"This is like a 1 in 50000 disease and can be cured if detected and treated early," Evan Galvanek said. "Neither Jenna's or my family tree show any signs of SCID, making this diagnosis so frustrating from its unpredictability."

Galvanek said he expects their medical bills to be close to $1 million with intensive care, extended hospital stays and the transplant itself costing $100,000.

To find out how you can help the family, go to a website setup to help.

To learn more about the family you can go to their Facebook page.

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