HAWKINS COUNTY, Tenn. (WJHL) — 10-month-old Quinlee Mae got to spend her first Christmas home in Hawkins County after being in and out of the hospital for three months. Much of that time has been spent hours away in Nashville.
Quinlee was diagnosed with a rare genetic disease back in November called Spinal muscular atrophy with respiratory distress or SMARD.
Now back home, it has taken some getting used to.
“Back at home that first night, she woke up and was like ‘where am I at?'” said Quinlee’s father, Scott Shriner. “She wasn’t even familiar with her own house.”
Quinlee couldn’t come home because she needed a special machine to help her breathe, a cuirass ventilator.
This special equipment is manufactured in the state of New York. The process to get that machine took a month.
Her family says state law prohibits medical equipment to be sold in the state without them having a licensed location within the state.
“We even contemplated just moving states in order to get the process going,” said Shriner.
“I was even like, ‘is this even possible?,” said Quinlee’s mother, Diamond Bowery. “‘Can we sell our house and buy another one? Can we find something to rent?'”
That didn’t have to happen because the supplier and manufacturer of the ventilator got a temporary Tennessee license, and Quinlee received her ventilator.
Following the process, her family plans to work with state legislators to change the law.
“We’re hoping that somebody will work with us to make sure that nobody else goes through this,” said Bowery. “If you go to the hospital and you need something, you can just get it and come home. You don’t have to jump through all of these hoops.”
Scott Shriner said he plans to work with Tennessee State Representative Gary Hicks beginning next week to get a law moving before January when the General Assembly returns to session.
To learn more about Quinlee’s journey and how to help, visit her website.
