Meet Patient Champion Kya!

Kya is one of our amazing Patient Champions at Nationwide Children’s Hospital.  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 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.

One of our Children’s Miracle Network partners, Extra Life, found out that Kya was a huge anime fan and invited her to attend Matsuricon a few weeks ago.  Based on the smile, we are pretty sure she had a wonderful time!