Meet Ethan: 2021 Family Advocacy Week Champion

Ethan is participating in Speak Now for Kids Family Advocacy Week from June 13-18, 2021. Through this event, Ethan and his family will discuss his health journey, Gillette Children's Specialty Healthcare’s role in providing Ethan with necessary health care services, and why the public and our elected officials must invest in the future of child patients like Ethan.

Ethan was born with distal arthrogryposis, a disorder characterized by joint deformities that restrict movement in the hands and feet.

At 9 days old, Ethan’s doctors started putting him in a series of casts to help correct any deformities. A few months later, Ethan had a tenotomy, to cut tendons, then it was back to casts for continued correction and healing.

Once his legs got stronger, the casts were removed and Ethan was set up in shoes and a bar to provide more mobility, however, he was still not walking or standing.

“His feet just didn’t look right,” says Sarah, Ethan’s mother. “It was back to casts again until he was finally ready and fitted with leg braces.”

Eventually, thanks to many casts and a lot of physical therapy, Ethan was able to walk and even run on his own. Now, at 8 years old he is unstoppable and loves to play hockey.

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