Baby with rare disorder to celebrate 1st Thanksgiving at home in Westchester County
A 13-month-old girl in Westchester born prematurely with a rare disorder that makes it hard for her to breathe and swallow will spend her first Thanksgiving at home.
It seems so simple, so routine: a baby eating and enjoying food.
In this case, it was a pre-Thanksgiving meal of pureed turkey, sweet potato 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,” said mom Susan Milton.
Gracie, as she’s known, was born last October with a genetic condition that occurs in one out of every 11,000 births.
One of the characteristics of Beckwith Wiedemann Syndrome is an enlarged tongue that obstructs airflow, making both eating and breathing difficult.
“It’s been hard but we are just kind of rolling with the punches and figuring it out as we go,” said Gracie’s dad, Nicholas Milton.
In 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 have been teaching her how to use the muscles in her tongue and mouth safely for swallowing.
The goal is to wean her off the feeding tube through with she still gets much of her nutrition.
“When you and I eat, we take the food and there’s a lot involved that we don’t ever have to pay attention to, and so it’s breaking it down step by step,” said Jessica Meyer of Blythedale Children’s Hospital.
Gracie spent three months at the hospital and was discharged in June. She continues her therapy as an outpatient, but that means she’ll be able to spend her first Thanksgiving at home.
“It’s not lost on us how lucky we are, you don’t want to be in this position, but we’re so incredibly lucky that she’s here,” Susan Milton said.
And that’s reason to give thanks indeed!