Kya’s Story

Within minutes of her birth, Kya was diagnosed with Arthrogryposis Multiplex Congenita (AMC).

A rare disorder occurring in one out of every 3,000 live births, AMC involves a variety of non-progressive conditions that are characterized by multiple joint contractures (stiffness) and involves muscle weakness found throughout the body at birth. For Kya, she has a more severe form of AMC that affects her jaw, arms, wrists, legs and feet.

Kya has endured more than 20 surgeries and frequents the halls of Nationwide Children’s Hospital weekly with visits to various clinics, including orthopedics, pulmonary and physical and occupational therapy, to name a few.

Despite her physical limitations, Kya has an incredibly positive outlook and deep love for life and her family. Her family adopted the mantra, “This is us!” in their united efforts to be strong together.

“As a family, it is our goal to help spread awareness of AMC and to educate and inspire those with physical disabilities by sharing our story,” says Kylie, Kya’s mom.

Recently Kya’s therapy has expanded to include aquatics to assist Kya in learning how to balance and become acclimated with gravity out of her electric power chair.

“I feel fortunate to have a hospital like Nationwide Children’s here in our hometown with the top doctors and therapists in the country. Kya’s occupational, physical and aquatic therapists all work together with us to formulate and execute plans to help Kya begin to reach the milestones of feeding, dressing and ultimately attending college independently. It will take the efforts of Kya, the support of our family and the guidance of our medical team to realize these goals. We’re hopeful!” says Kylie.

Kya is a creative and outgoing history buff who enjoys visiting museums and watching anime. She and her sister like listening to and singing songs from Hamilton the musical in their downtime.

https://flutter.nationwidechildrens.org/wp-content/uploads/2018/11/Kya-.jpg

Within minutes of her birth, Kya was diagnosed with Arthrogryposis Multiplex Congenita (AMC).

A rare disorder occurring in one out of every 3,000 live births, AMC involves a variety of non-progressive conditions that are characterized by multiple joint contractures (stiffness) and involves muscle weakness found throughout the body at birth. For Kya, she has a more severe form of AMC that affects her jaw, arms, wrists, legs and feet.

Kya has endured more than 20 surgeries and frequents the halls of Nationwide Children’s Hospital weekly with visits to various clinics, including orthopedics, pulmonary and physical and occupational therapy, to name a few.

Despite her physical limitations, Kya has an incredibly positive outlook and deep love for life and her family. Her family adopted the mantra, “This is us!” in their united efforts to be strong together.

“As a family, it is our goal to help spread awareness of AMC and to educate and inspire those with physical disabilities by sharing our story,” says Kylie, Kya’s mom.

Recently Kya’s therapy has expanded to include aquatics to assist Kya in learning how to balance and become acclimated with gravity out of her electric power chair.

“I feel fortunate to have a hospital like Nationwide Children’s here in our hometown with the top doctors and therapists in the country. Kya’s occupational, physical and aquatic therapists all work together with us to formulate and execute plans to help Kya begin to reach the milestones of feeding, dressing and ultimately attending college independently. It will take the efforts of Kya, the support of our family and the guidance of our medical team to realize these goals. We’re hopeful!” says Kylie.

Kya is a creative and outgoing history buff who enjoys visiting museums and watching anime. She and her sister like listening to and singing songs from Hamilton the musical in their downtime.

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