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From the Heart: Living with spinal muscular atrophy

(HOI) — Annalise Wettstein’s dad, Wade, says she was about 2 years old when he and his wife noticed something was wrong.

“She had a hard time jumping. She could walk, but she wasn’t real steady on her feet so she’d walk real loose. She had a hard time getting up off the ground and she couldn’t really go up steps,” said Wade Wettstein.

Anna has spinal muscular atrophy type 3, a genetic disease that affects one’s nerve cells leading to deterioration of the muscles.

“Our other kids were healthy and normal so yeah it took us awhile to figure out what was going on and we went to a few doctors,” Wade said.

He said when they finally learned what was going on there was fear and confusion.

“Everybody’s different,” Wade said. “We didn’t know how fast she was going to decrease her muscle mass, so it really took us awhile to get her on her feet and seek help and find it.”

Through doctors, Anna and her family found Easterseals.

Anna has been going to the organization for three years.

She started with land therapy but quickly moved to the pool, where her therapist says she’s been excelling ever since.

“When I feel the water it’s always warm,” said Anna Wettstein.

“To be considered therapeutic it has to be a certain temperature. It really makes it so the kids muscles stay nice and calm. The water makes them bear less weight through their joints so things that are more challenging for them on land are actually much easier for them to do in the water,” said Carolyn Sobieski, Anna’s therapist at Easterseals of Central Illinois.

The time in the water has helped shaped Anna too.

“Her physical abilities have gotten better, but a lot of it is her emotional strength,” added Wade Wettstein.

With SMA impacting all muscles, jumping and climbing stairs have been a challenge.

“She told me she can go up five stairs unassisted which is awesome. Five steps at a time and it doesn’t sound like a lot for normal people, but it’s a big deal when you have SMA.”

“She’s not really needing any support in the pool. She really likes to think of herself as a little mermaid. Anna is a very smart, spunky little girl. In the pool she definitely opens up,” said Sobieski.

“My hopes for her is that she can be herself and she’s beautiful and perfect just the way she is,” said Wade.

Jessica Cook

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