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Be the Change: Slinger teen advocates for kids with rare genetic anomalies

By Natalie Shepherd

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    SLINGER, Wisconsin (WDJT) — Most high schoolers are just starting to think about what they’d like to do with their lives. This week, we meet a 17-year-old from Slinger who’s already focused on a big goal.

Aidan Abbott was born with ectodermal dysplasia. It’s a rare genetic anomaly, impacting 3.5 kids out of every 10,000. After he was diagnosed, his family found that insurance companies often tried to deny claims for his treatment. So for the last six years, he and his family have been lobbying lawmakers to change that.

When he’s not in Washington, D.C., Abbott works four days a week after school, hauling pallets, scanning all kinds of items and stocking shelves at Midwest Food and Tobacco in Slinger.

“Once you get it down, it’s basically just rinse and repeat every day,” Abbott said, as he placed an item high on a shelf.

The warehouse is stocked with everything — Combos, candy, ramen, and Gardetto’s. Aidan said he’s interested in all the flavors of beef jerky.

“The Carolina Reaper, or the Ghost Pepper,” he said.

The after-school job gives him cash to grow his Manga collection, Japanese comics and graphic novels he collects. In most ways, he’s your typical teen.

“I like to play video games and hang out with friends,” he said.

But Abbott was born with a genetic anomaly.

“It’s a version of ectodermal dysplasia and basically affects my hair, skin, nails, teeth, sweat glands,” he explained.

Aidan’s mom, Becky Abbott, says it took years to figure out.

“It took us almost five years to get a diagnosis, and what had happened, his teeth were not coming in,” she said.

Aidan has gotten a lot of medical treatment along the way, which Becky Abbott said insurance often denied.

“We have to fight with insurance for every single treatment plan that he has,” she said. “It’s frustrating and it exhausts all of your energy. No family should have to go through it.”

Abbott said the experience has inspired Aidan, and the whole family, to try to do something about it.

“When we kept receiving denials for his coverage, we decided to pack up in our car and drive to D.C., where Aidan then shared his story with Senator Baldwin,” Abbott said.

Aidan has shared his story with Wisconsin Senator Tammy Baldwin, Senators Joni Ernst and Amy Klobuchar, and hundreds of other politicians. All of those meetings paid off. Senator Baldwin is one of the senators who worked on a bill Aidan got to name.

“Actually, he sat in his room one day and went through all different words to see what he could come up with,” his mom remembered.

He settled on E.L.S.A., or the Ensuring Lasting Smiles Act.

“The Ensuring Lasting Smiles Act is legislation that will close loopholes that insurance has that denies medically necessary treatments for congenital anomalies,” Aidan explained.

If it becomes law, insurance companies would have to cover kids like Aidan and those with all genetic anomalies.

“There are families all across the United States who are advocating for congenital cataracts, kids who are born with missing ears, kids who have congenital lymphedema,” Becky Abbott said of all the different people impacted.

Aidan started his campaign at just 11 years old. It’s taken six years, but progress is being made. Aidan said he plans to return to Washington soon.

“We’re planning on going this summer multiple times and to push it even further,” he said with conviction.

The U.S. House of Representatives passed the Ensuring Lasting Smiles Act in April. Aidan is now pulling for the Senate to do the same.

“I’m amazed and unbelievably proud of Aidan,” his mom said. “He’s made this his mission in life, that not only does he share his story, but he shares the story of other children who would benefit from this legislation.”

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