‘The sky is the limit for her’: Bristol girl with rare genetic disorder a star on the piano

Small But Strong

BRISTOL, R.I. (WPRI) ─ For 9-year-old Emma Gray, music is medicine.

“Music just makes her come alive,” Emma’s mother Shannon Gray said. “It’s easy for her, it just comes to her. A lot of things don’t come easy.”

Emma was diagnosed with Wiedemann-Steiner Syndrome just shy of her second birthday.

“I was frightened,” Shannon recalled. “I mean, when she was diagnosed, there were less than 20 people in the world. Like any other parent I just wondered, ‘what does this mean for her?'”

Shannon said she only knows of one other child in Rhode Island with the same diagnosis as Emma.

Widemann-Steiner Syndrome can cause developmental delays, unusual facial features, short stature, decreased muscle tone and feeding and digestion issues.

Doctors originally told Emma’s parents she’d likely need a feeding tube for the rest of her life. But that is just one of many ways Shannon said her daughter is proving doctors wrong.

Shannon said learning is difficult for Emma, and she’s starting to realize she’s different from her peers.

“She finds reading to be difficult, she finds math to be difficult. Paying attention is nearly impossible,” Shannon explained. “She knows it’s one of the reasons we see as many doctors as we do and it’s the reason why daddy and I tell her not to run as much because her balance is terrible and she gets hurt.”

Emma has already undergone 10 surgeries in her life, including on her back, eyes and ears. She also gets physical, occupational and speech therapy on a regular basis.

But when it comes to the piano, Emma is a star. Her father, David Gray, said she loves music just as much as she loves helping others.

“She gives 100%,” David said. “She wants to help everybody and anybody.”

Emma also wants to be a firefighter when she grows up, just like her dad.

It’s her determination that has Shannon and David convinced nothing will stop her.

“I think the sky is the limit for her,” Shannon said. “I really, truly do.”

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