Baby with rare disease to celebrate 1st Thanksgiving at home in Westchester County, New York

Baby with rare disease to celebrate 1st Thanksgiving at home in Westchester County, New York
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VALHALLA, Westchester County (WABC) — A 13-month-old girl in Westchester who was born prematurely with a rare condition that prevents her from breathing and swallowing will spend her first Thanksgiving at home.

It seems so simple, so routine: a baby eating and enjoying the food.

In this case, it was a pre-Thanksgiving meal of mashed turkey, sweet potatoes, and even chocolate mousse.

But for 13-month-old Ava Grace Milton, this milestone, shared with Eyewitness News, was the result of hard work.

“She’s full of life…she’s a fighter, she’s worked for everything and this poor kid has been through so much,” her mother Susan Milton said.

Gracie, as she is known, was born last October with a genetic condition that occurs in one in 11,000 births.

One of the hallmarks of Beckwith Wiedemann syndrome is an enlarged tongue that obstructs airflow, making eating and breathing difficult.

“It’s been tough, but we’re just rolling with the hits and figuring it out as we go,” Gracie’s father, Nicholas Milton, said.

During her first four months, Gracie underwent a tracheotomy and tongue reduction surgery to improve airflow.

In March, she arrived at Blythedale Children’s Hospital in Valhalla, where speech therapists taught her how to safely use her tongue and mouth muscles to swallow.

The goal is to wean her off the feeding tube while still providing her with much of her nutrition.

“When you and I eat, we take the food and there’s a lot of stuff that we never have to pay attention to, and so it breaks down step by step,” said Jessica Meyer of Blythedale Children’s Hospital.

Gracie spent three months in hospital and was discharged in June. She is continuing her therapy on an outpatient basis, but that means she will be able to spend her first Thanksgiving at home.

“We don’t lose sight of how lucky we are, you don’t want to be in this position, but we’re incredibly lucky to have her here,” Susan Milton said.

And that is a reason to give thanks indeed!

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