A Mt. Juliet cystic fibrosis nonprofit and a Nashville mom with a young son dealing with the disease were the catalyst for a new specialty license plate to raise awareness and funds for those with the life-threatening disorder.
Pre-orders of the “Cure Cystic Fibrosis” license plate opened up May 15 with the goal to sign up 1,000 to get the plate on the permanent roster of specialty plates to buy.
Already, nearly 50 plates have been ordered and this is a good start said Amanda Walker, whose son Emmett, 4, was diagnosed with the inherited genetic defect at 72 hours old. She partnered with Cure for Our Friends in Mt. Juliet to get the ball rolling on the license plate.
“I got the idea two years ago when I renewed my license plate and saw all the specialty plates representing so many things,” said Walker, who is married to Wesley. They have three children. “It took some work, but we are on our way. I am so excited to know if just one person driving down the road sees the plate and gets curious and looks it up. We hope it will raise tremendous awareness.”
If the mandated 1,000 plates are sold within a year at $61.50 per plate, $26,000 will go directly to Cure for Our Friends. And, if people continue to renew the plate, these can be recurring funds, plus exposing the plate to new purchasers.
Emmett is Walker’s youngest child. When he was born and had a bowel blockage, the surgical procedure to fix it was not intimidating to Walker and her husband. Things took a quick turn to a devastating diagnosis as the surgery revealed Emmett had CF.
“Our jaws hit the floor,” Walker said quietly. “We were told and the surgeon left to finish the surgery.”
The parents gathered their faith and studied ferociously while Emmett stayed in the neonatal intensive care unit for a month.
“We came home,” said Walker. “We hit the ground running and made appointments at the CF clinic.”
She said about 30,000 people in the United States currently have the disease.
According to Vera Smith, president of Cure for Our Friends, about one in 20 people in the United States carry at least one defective gene. People with CF have long-term lung and digestive disorders. Hospitalizations and continuous medicine and treatment keep CF patients alive.
“Which makes it the most common genetic defect of its severity in the United States,” she said.
Cure for Our Friends was founded in 2014 and is entirely volunteer run.
“We as an organization provide financial assistance to families suffering with cystic fibrosis,” said Smith. “If the license plate sells 1,000 and gets approved, not only would the funds garnered from it go directly to help Tennessee families, it would be an amazing step in spreading awareness for a little-known disease.”
Cure for Our Friends provides funds for basic necessities, from prescriptions to water bills.
“Whatever a family needs at the time,” said Smith. “We have paid hundreds of bills for our CF families.”
While today Emmett is a happy, active 4-year-old, the first four months of his life were Walker’s “darkest” days That’s why she’s determined to raise awareness and funds for those dealing with exactly what they went through.
Emmett must take medicine daily and take two, 30-minute breathing sessions each day. But, to him, it’s routine and he takes it all in with somewhat ease. He loves PBS shows and the Atlanta Braves.
“He will be in baseball in the fall,” said his mom. “He’s happy and always in a good mood.”
A triple combo drug (Trikafta) has been approved and soon Emmett will be old enough to take it.
“It’s not a cure, but the closest thing,” said mom.
To pre-order a Cure Cystic Fibrosis license plate go to cureforourfriends.org