HONOLULU (HawaiiNewsNow) — Janelle Fiesta was just one year old and the youngest of three children when doctors diagnosed her with a serious and progressive neuromuscular disease called spinal muscular atrophy, or SMA.
The condition affects 1 in 10,000 children.
“I noticed growing up that I was physically different from my peers. I wasn’t able to do physical activity like sports,” she said.
The genetic disease weakens the muscles and hinders movement. This confined her to a wheelchair, so she turned to drawing and at 26 is a very talented anime artist.
“I was very inspired by Disney, growing up, especially with the movies and everything,” she said. “So I was like, ‘I want to do this one day. “”
Fiesta is also the first-ever SMA patient in Hawaii to take the first medication for the disease that can be taken at home. His name is Evrysdi.
“I am very grateful for the medications I can take. Evrysdi gives me comfort knowing that my SMA will not progress any further,” she said.
A small daily dose does the trick. Before starting to take Evrysdi, Janelle had to go to the hospital for lumbar puncture treatments. She says these procedures were helpful, but they hurt.
“Very uncomfortable. Very anxiety-provoking,” she said.
Fiesta is on a crusade to raise awareness of SMA. Hawaii is one of 10 states not screening infants for the disease. She hopes that will change.
“Parents can see that their children have it. And they can see there is a treatment that can stop it,” she said.
Fiesta insists her illness doesn’t define her or hold her back. She’s building a digital art business called Cute Loot Arts with a cast of colorful characters.
“I hope it will make others happy,” she said.
Her home medication gives her hope for an independent life one day, and it’s a pretty picture.
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