Courageous Kids: Molly Shaw

At seven years old, Molly Shaw is heading into first grade with a new vocabulary that a cleft palette used to not allow.

It's one of many possible side effects of the velocardiofacialsyndrome Molly was diagnosed with just two weeks before birth.

Though it was a term her adoptive parents Jim Bob and Suzi Shaw had never heard, it didn't take them long to learn it was a complicated name to mean Molly was missing part of one of her chromosomes.

It's also called DiGeorge Syndrome or more simply, 22Q, which is diagnosed in about 1 in 6000 kids.

"Our world's kind of fell apart and we kind of freaked out, and then we researched. And then we were all right," said Suzi Shaw.

They learned Molly would need open heart surgery by the time she was three-months-old.

Before her first birthday, it was time to repair a cleft palette.

That's when they met Children's Health's Director of Pediatric Plastic and Craniofacial Surgery Dr. Alex Kane.

"It's a huge problem not to be able to communicate. It's very frustrating for the children," said Kane.

But like many kids with 22Q, one surgery wasn't enough to fix Molly's speech which made normal kid things like school tough.

"The first year nobody would play with her because she couldn't talk at all. You know, she was this child that said a lot of Ms and Ns, but she really didn't talk," said Suzi.

So a few months ago, Molly was back at Children's where Kane created a pharyngeal flap.

"The idea is that if the palette doesn't move well enough to touch against the back wall of the throat like we were talking about, then you need to sort of partially block that airway so that the air won't leak out through the nose," said Kane.

It was an intensive surgery, but it finally gave Molly the ability to be understood.

And though it's been a long road for Molly and her family to get to this point, the journey's also connected them with other families all over the state caring for one of the one in 6,000 kids born with 22Q.

"It changes you," said Suzi.

Suzi now works as the vice president of 22Q Texas, helping other families get the support Molly's had.

"You're going down the same path. You're fighting the same fights and you're raising incredible humans," said Suzi.

And though Molly's had an uphill battle, she's already proven she can take on whatever challenges come her way.

"Whatever's ahead of her, she'll be able to conquer, right? And she can look back on her life and what she's accomplished in a short amount of time, and go, 'I can do anything.' I don't think anything stands in her way just because she has a diagnosis of 22Q," said Jim Bob.

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