Hampton Roads toddler lives with rare syndrome

Hampton Roads toddler lives with rare syndrome

08:17 PM EDT on Tuesday, October 2, 2007

Reported by: Kathryn Barrett

For one Hampton Roads child, infection would not make him ill, but would kill him.

Qarim is nearly two-years-old, and he lives in isolation to protect him from germs since he has no immune system.

In the past, children like Qarim were known as “bubble” boys or girls. Now, children with a rare syndrome known as SCID, Severe Combined Immunodeficiency, lives in the hospital waiting for their best hope; a bone marrow transplant or gene therapy.

Whenever his parents and brother come to visit, they must wear a mask. So, the little boy never sees a mouth, never gets a kiss without one, and never leaves his isolation room at CHKD.

“It’s unbelievable,” said his mother, Sherreda Finnell. “It’s been life-changing. And so, I know it can possibly be fatal.”

Since newborn screening isn’t performed for the rare condition, no one knew Qarim had no immune system.

“These children are lacking b-cells and t-cells, which are two very important cells to help you fight off infection,” said Dr. Cynthia Kelly, CHKD immunologist.

Qarim’s immune defiance was discovered after he received a chicken pox vaccine and the virus attacked his liver and eyes.

“Now, he is currently blind in his left eye and the ophthalmologist is working diligently to save his right eye,” said Qarim’s mother.

Aside from a trip to Richmond to investigate a bone marrow transplant, Qarim has lived at CHKD since May.

“Anytime I think my world is going bad and things are bad for me, I think about him,” said Qarim’s father, Qaid Hyman.

Since no relative is a match for a bone marrow transplant for Qarim, his parents’ hopes hinge on experimental gene therapy.

“The only think I can do is take one day at a time and hope this will allow my child to live a normal life,” said Qarim’s mother.

“He’s a fighter,” said Qarim’s father. “We believe it’s going to be a long journey but we’ll make it.”

They hope Qarim will qualify for experimental gene therapy at the National Institute of Health.

If you want to know more about Qarim and how you can recognize if your baby is living without immunity, Qarim’s mother is holding a seminar this weekend in Virginia Beach and it’s open to the public.

Support for Qarim and SCID Syndrome Seminar will be held at the Virginia Beach Central Library, Sunday, October 7, at 3 pm

Qarim’s website: http://www.caringbridge.org/visit/qarimhyman

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