Georgia child regains hearing taken by rare genetic disorder

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Leah Henderson, 8, came into the lives of her parents at 15-months old, as their very first foster child. With 3 kids of their own, the Summerville, Georgia couple had requested an older child.

"I remember I'd worked third shift that night and it was early in the morning, and I was sleeping, and my wife called and said, 'DFACS is on their way with a baby.' And, I said, ' What? A baby?  We don't do babies,' recalls Brandon Henderson.

Breezy Henderson, a nurse, was a little uneasy, too.

"And when I got home, and he was holding her, and she was asleep.  And she was just precious.  It was scary. It was very scary at first", says Breezy.

Early on, the Hendersons noticed Leah didn't seem to be hearing or seeing things around her.  They'd put her down, and she wouldn't move.

"The exact place we would set her is the exact same place she would be when we came back," recalls Breezy.

But they grew to love Leah, and at two adopted her. Soon, the doctor was giving them a list of possible diagnosis. One was Alstrom syndrome.

"I remember sitting it down and thinking, please don't let it be this. Please, let it be something else besides this," recollects Breezy.

But it was Alstrom Syndrome, a rare, progressive genetic condition that affects Leah's whole body. She was quickly losing her vision and hearing.  So, they tried hearing aids.  Then joined a research study in Boston.

"And the specialist said, "Leah needs cochlear implants. And we'll do the surgery," says  Brandon.

But their health insurance wouldn't cover an out-of-state surgery, and Leah has heart issues that make anesthesia risky.

At Wellstar North Fulton Hospital, otologist Dr. Jennifer Tirino, a surgeon who specializes in ear problems, agreed to pull together a team to perform the cochlear implant surgery.

"The one thing that really made me know this was the right thing for Leah was you could see she had so much going on on the inside and she just couldn't communicate it to us.  And she wanted to be understood, and she wanted to hear," says Dr. Tirino.

Four weeks after her surgery, Leah's implant was turned on.  It will take time for Leah's brain to process sound.  But, already, the Hendersons feel a door reopening.

"She repeats things back to us. She's starting to associate words with objects. Stuff we've never been able to do with her, " says her dad.

Breezy says Leah's taught them so much.

"Never give up.  It's always worth the fight."