A breakthrough treatment is helping this young artist stay focused on her craft

She's now bloomed into an artist with a blissful business.
Published: Apr. 4, 2022 at 5:14 PM HST|Updated: Apr. 5, 2022 at 8:48 AM HST
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HONOLULU (HawaiiNewsNow) - Janelle Fiesta was just a year old and the youngest of three kids when doctors diagnosed her with a severe, progressive neuromuscular disease called spinal muscular atrophy or SMA.

The condition affects 1 in 10,000 infants.

“I noticed as I grew up I was physically different from my peers. I wasn’t capable of doing physical acitivity such as sports,” she said.

The genetic disorder weakens muscles and hampers movement. It confined her to a wheelchair, so she turned to drawing and at 26 is a very talented anime artist.

“I was highly inspired by Disney, growing up, especially with the movies and everything,” she said. “So I thought to myself, ‘I want to do that one day.’”

Fiesta is also the very first SMA patient in Hawaii to take the first medication for the illness that can be administered at home. It’s called Evrysdi.

“I’m very grateful for the medication that I’m able to take. Evrysdi gives me the comfort knowing that my SMA won’t progress any further,” she said.

A small daily dose does the trick. Before she began taking Evrysdi, Janelle had to go to the hospital for spinal tap treatments. She says those procedures were helpful, but they hurt.

“Very uncomfortable. Very anxiety inducing,” she said.

Fiesta is on a crusade to spread the word about SMA. Hawaii is one of only 10 states that doesn’t screen infants for the illness. She hopes that changes.

“Parents can find that their children have it. And they can see that there’s a treatment that can stop it,” she said.

Fiesta insists her disease doesn’t define her or hold her back. She’s building a digital artwork business called Cute Loot Arts with a cast of colorful characters.

“My hope is that it makes other people happy,” she said.

Her at-home medication gives her hope for a life of independence someday, and that’s a pretty picture.

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