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news News Monday, February 26, 2018 Monday, February 26, 2018 2:04 PM - Monday, February 26, 2018 2:04 PM

Learning the keys towards independence

Owen's arthrogryposis experience

Learning the keys towards independence

Like many pre-teens, 11-year-old Owen is interested in having more independence at home and with his friends, whether playing drums and keyboard in his band, or just hanging out. However, Owen’s path towards independence requires a more focused effort than some of his peers, because of his physical differences. Owen has arthrogryposis, a rare condition from birth that affects his joints and requires him to use a wheelchair most of the time.

Owen and his parents are working on him being more independent with dressing himself – and his specially adapted clothing, provided through a program at Shriners Hospitals for Children, has helped. Owen is also working on moving around the house more independently and when hanging out with other kids. “With his wheelchair, he has the freedom to go with his friends and just be a kid. Letting go is our focus for 2018,” Peg, Owen’s mother said.

According to rarediseases.org, arthrogryposis is a condition of fixed joints that most often impacts a patient’s legs and arms, and sometimes the jaw. The cause is unclear. When arthrogryposis affects multiple areas of the body, it is known as arthrogryposis multiplex congenita (AMC). “AMC is not a diagnosis, but is an umbrella term that covers 300–400 different types of conditions and syndromes. Amyoplasia is the most common type and occurs in one in 10,000 births,” Peg said. Owen has been a patient at Shriners Hospitals since he was a few months old. “Being part of the Shriners Hospitals community is about family and having a supportive network. We know that Owen is receiving excellent care."

Join us for Shriners Hospitals Arthrogryposis Family Education Day

Shriners Hospitals for Children — Chicago is hosting an Arthrogryposis Family Education Day on May 19. Parents, adults and children of all ages are welcome! The event is provided at no cost to families and includes lunch.

Speakers include Shriners Hospitals pediatric orthopaedic surgeon Haluk Altiok, M.D., hand and upper extremity surgeon Felicity G.L. Fishman, M.D., and Sue Mukherjee, M.D., speaking on rehabilitation services. Also hear from our experienced team about physical and occupational therapy, nutrition and dietary needs, social/emotional support and recreational therapy. There will also be special activities for kids.

Register online

Questions? Contact Kate at 773-385-5876 or via email.

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