Lifewatch: DiGeorge Syndrome

Reported by Claire Hosmann - bio|email

(WECT) - As Ryan Dempster battled in Cubs spring training, his daughter was about to begin the fight of her life.

On April 1, Riley Elizabeth Dempster was born, joining Dad, Mom, and big brother Brady.  But, soon after her birth, they learned something was very wrong.

"Within 48 hours she started shaking," said Jenny Dempster. "She wasn't swallowing, and they didn't know why."

Riley was diagnosed with DiGeorge Syndrome, a rare genetic disorder with a potential of 186 symptoms.

"Probably one of the more severe disorders in terms of being able to handle secretions, being able to suck and swallow," said Dr. James Collins of Children's Memorial Hospital.

At just five weeks old, Riley underwent a tracheotomy, forcing her to rely on a feeding tube.

"All secretions pool in her mouth, and if we didn't have a way to suction those out, she would have a chance of aspirating those into her lungs and causing pneumonia."

After spending the first 12 weeks of her life in the hospital, Riley finally came home.

"It was almost like a Christmas morning kind of feeling," said Ryan Dempster. "You have this gift you've had all along but can't enjoy it in the comforts of your own home."

They're uncertain she'll ever be able to swallow on her own, but they're challenging her to try.

"We have a saying in our house," said Jenny Dempster.  "It is a new year, no trach. So when she came home, we told her she's got six months and has to start swallowing."

"She's not gonna laugh, cry or coo until she gets that trach out," added Ryan Dempster.

Riley will deal with this syndrome in some capacity for the rest of her life, but it is her parents' hope that in coming out, the disorder will no longer be severely overlooked.

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