Kyashia H.

Condition: Facioscapulohumeral muscular dystrophy
City, State: Bend, OR
Club: Cascade Middle School Sparrow Club Service Hours: 272
Date Adopted: 2/23/2018

Kyashia's Story:

Kyashia is 11 years old. When she was born everything appeared to be normal, but her parents soon realized she was dealing with hearing loss.

When she started walking she had some problems with her balance, but her family thought it was due to her hearing issues. As she got older she began to arch her back quite a bit and walking was more difficult for her. Doctors weren’t sure about the cause of this.

At 9 years old she was referred to Shriners Hospital in Portland where she saw a muscle specialist who did a genetics test. She was diagnosed with FSHD. Facioscapulohumeral muscular dystrophy is a genetic muscle disorder.

In FSHD, weakness first and most seriously affects the face, shoulders and upper arms, but the disease usually also causes weakness in other muscles. For Kyashia, the muscles most affected are those that surround the eyes and mouth. She can’t smile and generally doesn’t have much strength in her mouth. It makes it difficult for her to brush her teeth. A common cold can keep her out of school for a week, because she can’t cough. She ended up with pneumonia a few years ago.

Kyashia also has muscle weakness in her hips and since 2010 has used her wheelchair 90% of the time. She can no longer walk by herself.

Despite all her challenges, Kyashia is a happy girl who loves music, books, and people watching at concerts, community events... or just about anywhere. Her favorite foods are fruits and vegetables.

Sparrow Cash raised for Kyashia will help with ongoing medical expenses, and everyday living expenses. Students at Cascade Middle School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.


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