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