NASHVILLE, Tenn. (WKRN) — A Tennessee mother is desperate to bring her 10-month-old daughter home for Christmas.
Baby Quinnlee was diagnosed with a rare genetic disorder and has been in the ICU at Monroe Carell Jr. Children’s Hospital at Vanderbilt for nearly three months.
In order to come home, Quinnlee needs a special device that is currently in Buffalo, New York.
On Thursday, Dec. 15, an emergency meeting was held between the Health Facilities Commission Board and the manufacturing company of the Cuirass ventilator.
The device is basically a modern-day iron lung which helps Quinnlee breathe on her own.
“Without it she can’t clear her secretions. Her lungs are going to fill back up, and in worst case scenario, she could die. We know with her disease, it’smore than likely going to happen,” said Diamond Bowery, Quinnlee’s mom.
Her disease is a very rare genetic disorder called Spinal Muscular Atrophy with Respiratory Distress. Her mom explained it’s basically ALS for babies.
The Cuirass machine has been a saving grace.
“We want to give her the best quality of life, and we are going to keep fighting for it. We don’t want to live in the hospital. I can’t even imagine the cost of staying in the hospital for this long,” Bowery said
Quinnlee is medically cleared to leave the hospital, but the only hurdle standing in the law is a state law.
“We want to be able to provide this service for this child and we are looking for recommendations for the function of the office,” Joe Polito with Buffalo Respiratory Therapy said.
On Thursday morning, the Health Facilities Commission Board unanimously voted to grant the manufacturer a conditional licensure. However, it requires the company to find a physical address in the state within 30 days.
“I am physically sick. I could throw up. Everyone was praying for this meeting at 9 a.m. where we thought we would get our answers, and we know less than we did before,” Bowery said.
According to Bowery, she’s not sure now if Quinnlee will be able to come home for Christmas.
“Her brother, he’s six and he doesn’t understand that his time is limited with her and we just want them to have that time together, but I don’t know how we can take her home without this machine,” Bowery said.
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News 2 did reach out to both the Health Facilities Commission and the manufacturer in Buffalo for an interview. However, both declined.
If you would like to help the family financially, there is a GoFundMe here.