Phoenix Children's Hospital helps young Valley girl with rare Aicardi syndrome

PHOENIX - Reese D'Ortenzio has spent nearly her entire young life in the hospital, but her time there has been made easier thanks to the folks at Phoenix Children's Hospital.

"I went for the ultrasound, just routine to see if it was a boy or a girl, and they found cysts on her brain," remembered Reese's mother, Kerry.

At just 4 days old, Reese had surgery to remove some of the more troublesome cysts. It was the first visit in what would become a long relationship with Phoenix Children's Hospital.

"She recovered well from that surgery.  We knew there were some structural abnormalities with her brain: She had no corpus collosum, which is the part of the brain that connects the two hemispheres," Kerry said.

Reese was diagnosed with Aicardi syndrome -- a genetic malformation so rare, it affects only a couple thousand girls worldwide.

"The understanding was that she's going to die. And she's going to have some serious special needs," Reese's father Mario recalled.

Life with Aicardi syndrome hasn't been easy for Reese. She can't feed herself, she can't speak, and she suffers with seizures daily, seizures that can only be kept in check with powerful medications.

"She never complains, she's happy no matter what, and she has been through more than any of us have ever been through," said Reese's mother.

The D'Ortenzios credit the staff at PCH with making their many hospital visits just a little easier.

"All of her doctors, they absolutely love her, these people are invited to our birthday parties, they're family," said Mario.
 

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