KANSAS CITY, Mo. — Brooklynn Enos and her older brothers are counting down the days until Silver Dollar City opens for the season. The amusement park near Branson, Missouri, is 5-year-old Brooklyn’s favorite place (and it opens March 16).
“She loves painting her nails, playing with Play-Doh,” Brooklynn’s mom, Rachel Enos, listed. “She wants to be a princess every single day.”
This princess was born with spinal muscular atrophy, SMA, a rare genetic disease where nerves don’t function as intended, resulting in muscle weakness.
The disease means Brooklynn uses a wheelchair (her go-go) to get around, and simple tasks like breathing and eating are much more difficult. Doctors who diagnosed her with SMA a month or two after her birth didn’t expect her to live more than a few months.
“We're both really stubborn,” her father, Matthew Enos, admitted. “We were like, ‘No, this isn't going to happen.’”
Brooklynn’s parents enrolled her in a clinical trial right away for a drug that earned FDA approval. But a surgery later in life made it more difficult for doctors to administer that medication through an injection in Brooklyn’s back.
In July 2021, Brooklynn started using Evrysdi, which the FDA approved for treating SMA in 2020.
“It’s our new, amazing miracle drug,” Rachel said. “I wish we honestly make the switch sooner.”
Evrysdi is the first medication for SMA that patients can administer themselves at home.
Rachel said the team at Evrysdi and its creator Genentech have assigned a personal representative to work with the Enos family. Throughout that time, Rachel has seen Brooklynn’s ability to swallow and sit up improve without any major side effects.
“To this day, they have an open line, we have like a personal person [at Genentech],” Rachel described. “We have become friends now. She'll text me, she checks on me, makes sure everything's great. It’s more like a family. They really take care of the patients and make sure that you feel comfortable.”
Matthew said he cherishes little moments like looking up to see Brooklynn buzzing down the sidewalk outside their Greenwood, Missouri, home in her go-go.
“We’re very grateful for how far she's come,” he said.
Monday, Feb. 28 is National Rare Disease Day. The Enos family wants other families in similar positions to see hope in the process and not focus on sadness this day. That is why Rachel posts videos on Facebook and YouTube encouraging others.
“People reach out to us from across the world to ask questions like, how did you do this, how are you doing this treatment, and she'll FaceTime people from other countries,” Matthew said.
