Bella B.

Condition: Merosin-Deficient Congenital Muscular Dystrophy (MDC1A)
City, State: Bend, OR
Club: Miller Elementary School Sparrow Club Service Hours:
Date Adopted: 12/18/2020

Bella's Story:

• Ever since Bella was born in August 2014, something was not right with her development. She lacked strength and coordination and she did not move much. As a baby, she was never able to lift her head up while laying on her belly. As she grew, she could never crawl, stand on her own, or walk.

• Bella was diagnosed with Merosin-Deficient Congenital Muscular Dystrophy (MDC1A). Congenital Muscular Dystrophy is a rare disease which limits Bella’s muscles and mobility. Experts estimate that this form of Muscular Dystrophy affects 1 in 200,000 people.

• Bella will likely never walk and will need assistance for the rest of her life doing things that many of us take for granted.

• Nothing has ever come easy for Bella, but her motorized wheelchair helps give her independence that she loves!

• Bella typically goes to weekly physical therapy appointments to help her gain strength. Due to Covid, that schedule has changed a bit. She is aware of her limitations but doesn’t let that stop her from trying to do things on her own.

• Bella has been through more in her short 6 years than many can imagine in their lifetime, yet she continues to inspire everyone daily.

• In spite of all her challenges, Bella has an incredible spirit and positive outlook. She enjoys being outside and going for strolls in the neighborhood. Bella also loves being a big sister to David and Amelia. She likes baking, reading stories, doing art projects, making bracelets, and playing games.

• Bella will be adopted as a Sparrow to Miller Elementary School. Miller students will have the opportunity to work hard to raise money for Bella’s ongoing treatment and travel through sponsored community service.


The Young Family
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