distal arthrogryposis William rehabilitation services

#AmazingIs Stories, Mighty Blog

No ordinary boy

Born with a one-of-a-kind genetic variance, 2-year-old William Schlimm learned to walk with the help of rehabilitation services at Children’s Minnesota.

William Schlimm: No Ordinary Boy from Children’s Minnesota on Vimeo. Or watch the video on YouTube.

Jessica Willey

William Schlimm may look fairly typical, but he’s no ordinary boy. He was born March 16, 2014, with distal arthrogryposis, a neuromusculoskeletal disorder that affects various joints in the body, and abnormalities in his hands, feet and scrotum.

distal arthrogryposis William rehabilitation services
William was born with distal arthrogryposis, which is characterized by contractures that mainly restrict movement in the hands and feet.

William endured various tests during his initial hospital stay. Results confirmed he had three hernias, hand abnormalities and rocker-bottom feet. Later he was diagnosed with torticollis (twisted neck) and plagiocephaly (asymmetrical skull).

Arthrogryposis is congenital and non-progressive. The joints in the body show contractures, stiffness, poor mobility or immobility and muscle fatigue. About 1 in 3,000 babies is born with arthrogryposis, and each child is different. Some cases are mild and affect only a few joints. In other children, the condition is more serious and affects more joints and restricts more movement. William is lucky in that he has distal arthrogryposis, which is characterized by contractures that mainly restrict movement in the hands and feet (affecting an estimated 1 in 10,000 people worldwide).

An appointment with the genetics program on the Minneapolis campus of Children’s Minnesota confirmed William’s distal arthrogryposis probably came sporadically from a genetic variance of unknown significance. (It’s unknown because he’s the only one in a worldwide database with this exact genetic variance — not inherited from either parent.)

Without treatment, William would have started walking on the inside of the foot, and that would have led to the formation of painful calluses, skin breakdown and overall foot pain.

At Children’s, a rehabilitation plan was developed with a team approach involving genetics, the neonatal intensive care unit (NICU) and occupational (OT) and physical therapies (PT) in mind. William immediately began therapy in the NICU/ICC for his hands. He attends OT and PT sessions each once a week at Children’s – Minnetonka.

Physical therapists use stretches and exercises to increase William’s range of motion and muscle strength so he can move better. PT works with William to improve his gross motor skills and provided a walker to help him learn how to walk. OT works with William to improve fine motor skills and strength and range of motion in his arms and hands. There he has been taught to develop refined grasp and prehension needed for functional hand skills such as learning how to eat with utensils and ways to move around (ex. how to get out of a chair and how to hold onto a walker).

William’s treatment included about 30 weeks of casting, including weekly trips to a specialist in St. Louis, for his rocker-bottom feet as well as surgery and three months of full-time leg braces. Now he only has to wear the braces at night for the next two to three years.

In December, four days before Christmas, William started walking — an early present!

distal arthrogryposis William rehabilitation services
William walked for the first time four days before Christmas at 20 months old.

My husband, Mike, and I are forever grateful to the countless nurses, doctors and therapists — from orthopedists to hand specialists to OT and PT — that have helped William along the way. Although he has been through many tough appointments and surgeries, William is lucky to have such a great team on his side. He’s happy, determined and refuses to let his condition get in the way of his functionality during eating and playtime. We’re extremely fortunate to have such an amazing boy in our lives and grateful for a son who’s anything but typical in so many incredible ways.

Jessica Willey is the mother of Children’s Minnesota patient William Schlimm.

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