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Pay it Forward: Cedar Rapids artist recognized on a national stage

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A young Cedar Rapids artist is now nationally recognized for her work, being one of 10 finalists in the 'Rare Artist Gallery,' an event held earlier this year in Washington, D.C.

Rylie Erbacher lives with Spinal Muscular Atrophy, or SMA, a progressive, neuromuscular disease that affects things like breathing, swallowing, and walking. Rylie uses a motorized wheelchair due to her condition.

The Rare Artist Gallery recognizes those living with a rare disease, and Rylie's portrait of a multi-colored lion took one of the top spots.

“I made it out of chalk pastels," said Rylie. "The eyes are colored pencils, but the rest of it is chalk pastels and sharpie for the lines.”

While this particular piece was the winner, Rylie experiments on a variety of mediums, including paper, cards, and CDs, using a variety of methods like colored pencils and pastels.

"It's really cool," said Rylie. "It's hard to believe sometimes because when I look at my art I’m impressed, but I don't think I would win something or get a trip out of it. It's really cool to get these opportunities."

In light of her daughter's accomplishments, Rylie's Mom Stephanie stresses the importance of early screening.

"The sooner that you have an intervention, the better the outcomes are," said Stephanie Erbacher. "When it's the first in your family, you don’t know to look for a disease you’ve never heard of. With treatments available and on the horizon, it's critical for children's and families to have access to that as soon as possible.

Stephanie says Rylie is currently on one of those treatments, a daily oral medication called Evrysdi, which is proving effective for mitigating her symptoms. Stephanie encourages other parents of kids living with rare diseases to seek each other out for help.

"Connect with the community," said Stephanie. "All of these rare disease have a community, and you just have to look for it. It's hard and scary when you get a diagnosis like that."

Despite the hurdles, she adds that a child living with a rare disease, like hers, can still thrive.

"Your kid can still do so many things. Even though it may look different than the life you may have pictured for your child, it doesn’t mean they're not gonna have a good life."

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