DURHAM -- Sydney Casanova, 12, has a new lease on life. She's now pushing the federal government to help give others a chance too.

“Well, when I was little, I was sick all day,” says Casanova. 

Doctors diagnosed her with DiGeorge syndrome shortly after her birth, meaning she didn't develop a full immune system.

“A common cold, a child like that, it would overtake their immune system and mostly likely they would not survive,” says her mother Melyza.

The family flew from Miami to Duke Hospital for an experimental procedure. Doctors transplanted an organ tissue into baby Sydney. The tissue helped train her T-cells to fight viruses and boost the immune system. The procedure worked and Sydney is 100% healthy.

“It was a huge risk. It was either taking the risk or not doing anything and letting her die,” adds Melyza.

The family came back to Durham Wednesday to share their story. They met with the hospital and the medical company, Enzyvant, to partner with and help persuade the FDA to approve the treatment.

“So once it becomes FDA approved, we believe the access will be much more available to patients who need it,” says Chief Executive Office Alvin Shih.

“Don't give up and be good,” adds Sydney, offering advice to those children still suffering from the syndrome.

   

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