ESTACADA, Ore. — A child from Estacada is progressing well after a new treatment to help with her spinal muscular atrophy.
All was going well when Lily Ahrens was born, said her mom, Alysa Ahrens.
"She was starting to meet her milestones, she could sit up, she could roll over," Alysa recalled.
But that didn't last forever: "Eventually, she stopped doing those things," Alysa said.
When Lily stopped doing the things she had always done, her parents sought medical help for their daughter. They went to a pediatrician first, then to another doctor.
"She referred us to a neurologist; she got her tested and got her the results, and within one month of her diagnosis, she was on treatment," Alysa said, "so, our whole world kinda turned upside down."
The neurologist diagnosed Lily with spinal muscular atrophy, also known as SMA. It's estimated there are more than 84,000 carriers for the genetic disease in Oregon.
"There are cells called the motor neurons that are in all our spinal cords that in SMA, these are the cells that tend to degenerate and die," explained Karen Chen, CEO for the Spinal Muscular Atrophy Foundation.
SMA causes difficulty with basic life functions, such as breathing, swallowing and walking.
The news was devastating to Lily's parents.
"All we knew was that our daughter was going to slowly deteriorate and that her life expectancy would be 20 to 25 years old," said Daniel Ahrens, Lily's dad.
Lily's parents soon discovered a new home treatment that would help Lily progress with her development. The treatment, Evrysdi, is the first of its kind.
"Evrysdi is a drug that is made by Genentech and is a drug that you can take orally at home ... before, you would actually have to go into a clinic or hospital and get an injection into the spine," Chen said.
The new treatment was a game changer for the family and would help Lily to do things she's never done before.
"It's non-invasive. It's a liquid she can take every day. It's something that's embedded in our routine," Alysa said. "When she was first treated, she couldn't sit up independently, so she'd have to have supports around her. Now, she's crawling on an incline."
Lily's parents said that while Lily's journey hasn't been easy, they wouldn't want anything to be different.
"If you get blessed with this diagnosis, just know that you have a wide support group of people and that it could truly change your life for the better," Alysa said.
For more information about spinal muscular atrophy, you can check out the SMA Foundation's website. You can also find out more about the newest research to help those with SMA here.