Condition: Rett Syndrome
City, State: Sherwood, OR
Club: Sherwood High School Sparrow Club Service Hours:
Date Adopted: 9/06/2019
• Ella is a sweet 15-year-old that radiates light, acceptance, perseverance and love. She communicates through an eye gaze speaking device, pictures, and partner assisted scanning using her eyes. She loves her dogs, going for bike rides, swimming, playing basketball and reading. She loves engaging with her school friends and playing with her younger brothers is a highlight each day. She loves to go horseback riding.
• When Ella was born, nothing seemed wrong. It wasn’t until she was 2 years old that her family noticed things weren’t going in the right direction. Ella stopped gaining new skills and, even worse, began to lose the ones she had learned.
• In December of 2007, Ella was diagnosed with a genetic neurological disease called Rett Syndrome, a rare disease that affects approximately 1 in 10,000 children, primarily girls. Perhaps the most disabling symptom of Rett Syndrome is Apraxia, or the ability to perform motor functions. Apraxia has taken away her speech and ability to move her body. It effects every facet of her body including her muscular, respiratory and autonomic systems. Currently there is no cure for this horrible disease.
• Ella wants us to remember a quote by Robert M. Hensel which says, “There is no greater disability in society than the inability to see a person as more.”
• Ella will be adopted as a Sparrow to Sherwood High School. Students will work hard to not only love and support her but raise money for Ella through sponsored community service and fundraising for Ella’s ongoing therapy and treatment needs.