NASHVILLE, Tenn. (WKRN) — Quinnlee’s Law is making movement in the state legislature.
Baby Quinnlee Shriner died in February from a rare genetic disorder called spinal muscular atrophy with respiratory distress.
Her family went through many hurdles to get their hands on the lifesaving machine called a cuirass, and while state lawmakers can’t rewind the clock, they are hoping the holdup doesn’t happen for any other family.
“We didn’t get really our good days at home with the family. We spent those, just me and her alone, four and a half hours away from home,” Diamond Shriner said.
Quinnlee’s genetic disorder made it difficult for her to breathe on her own, but a cuirass device helped her do just that.
After spending several months in the ICU at Monroe Carell Jr. Children’s Hospital at Vanderbilt, Quinnlee was medically cleared to go home. However, the family faced a hurdle.
“The state of Tennessee had a law in place that said unless that home medical equipment company had a physical location in the state of Tennessee, there was no way they could ship us that equipment,” Shriner said.
A state emergency meeting was held with the manufacturer, and the company had 30 days to find a physical location in the state of Tennessee.
“We fought with the state of Tennessee for over a month,” Shriner said.
After several weeks, the manufacturing company received a license allowing Quinnlee to come home just days before Christmas.
“To be together, it was amazing. She sat here and played with her wrapping paper,” Shriner said.
Not long after, Quinnlee passed away.
“This law created an incredible burden,” Tennessee Sen. Jon Lundberg (R-Bristol) said.
Now, state lawmakers are making sure this holdup doesn’t happen to any other family, because the Shriner’s had very little time to spend the good days at home.
“I think that’s why it’s so hard for me, because I was by her side every second of every day for so many months. And I’m thankful for that and to have the ability to spend that time with her, but the rest of her family did not, all because of one state law that did not let us come home,” Shriner said.
A bill called “Quinnlee’s Law” unanimously passed in the state senate on Monday night. The bill does away with the requirement for a provider of home medical equipment to have a physical location in the state of Tennessee.
The bill requires the provider to identify a contact person. At this time the bill is still working its way through the House.
If you would like to help out Quinnlee’s family, a go fund me can be found here.