Meet Elijah: 2020 Family Advocacy Week Champion

Eli running the bases with the Minnesota TwinsElijah is participating in Speak Now for Kids Family Advocacy Week from August 10-14, 2020. Through this special event, Elijah and his family will share information about his health journey, Gillette Children’s Specialty Healthcare’s role in providing Elijah with necessary health care services, and why the public and our elected officials must invest in the future of kids like Elijah.

A few days after the 20-week ultrasound, Corinne, Elijah’s mother, received a call requesting that she come back in to have more measurements taken. The tone of the ultrasound was different than the first, and ultimately confirmed that Elijah’s fibular bone in his leg was missing.

He was diagnosed with Fibular Hemimelia.

“We were pregnant for the first time, expecting our first child,” says Corinne. “We were ecstatic and amazed; I saw his little body for the first time during the ultrasound.”

Following the diagnosis, Elijah’s parents had to dedicate significant time and finances towards Elijah’s medical care.

Elijah saw a specialist at Gillette Children’s Specialty Healthcare in Saint Paul, Minnesota, consistently for the first 8 months of his life. There were routine x-rays and evaluations that had to be done until the surgery to amputate Elijah’s lower leg and prosthetic fitting.

He underwent a Syme’s amputation and a straightening of a bowed tibia that provided a good residual limb to fit a prosthesis. From there, he was cared for by the prosthetic team, who fit him with his first prosthetic at 12 months old.

“Elijah’s condition is manageable, and he is able to lead a very fulfilling life in part because of the support and treatment available through Gillette Children’s Specialty Healthcare,” says Corinne. “My son says that he wouldn’t refer to it as a condition but rather a unique gift, teaching him vulnerability and perseverance.”

Children grow quickly, and Elijah was no exception. He had to be fit with a new prosthesis approximately every six months.

Insurance only covers one prosthetic at a time and most often it’s just a basic prosthetic. Elijah, like so many kids, enjoys different types of sports and activities but insurance did not cover sports prosthesis. Thanks to the generosity of donors, through non-profits and hospital foundations, he received sports-specific prostheses for running and snowboarding.

Today, Elijah is doing great. He is mature and articulate enough to manage his care with guidance and direction. As a teenager, he is more aware of what having this condition means for his life. He enjoys reading, fishing, snowboarding and being a farmhand.

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