Condition: Rett Syndrome
City, State: Bend, OR
Club: Summit High School Sparrow Club Service Hours: 444
Date Adopted: 12/16/2016
After a relatively normal pregnancy, Frankie was born on August 13, 2009. She was a bright-eyed, typically-developing baby. But at six months old, her family noticed her left eye was turning in like a cross-eye fashion. This condition is called Esotropia. Also, she was not getting stronger and her movements were slightly shaky. Even so, the family was not too concerned, because the doctors did not appear to be concerned. They believed that the developmental delays were due to her eye problem.
When she was 14 months old, they consulted a pediatric eye surgeon, and she had corrective eye surgery October of 2010. Still, they continued to see changes and inconsistencies in her developmental growth.
By the time she was two and a half years old they knew something more serious was going on. Her movements became more Parkinson-like. Having started to develop a vocabulary early-on, she just lost her words and her desire to even attempt to speak. She began to have seizure-like episodes as well. As time progressed her doctor’s, specialists and therapists seemed to become more and more perplexed. About this time Frankie’s mom learned about Rett Syndrome in a class she was taking. When she suggested they run this blood test, all her support team said “that’s not what she has”. For two more years, they searched for a diagnosis.
Finally, after much persuasion, their neuro-geneticist ran the test they originally had requested. The test came back positive for Rett Syndrome, a rare but serious genetic disorder. Rett Syndrome is a micro-deletion on the MECP2 gene. The doctors confirmed the diagnosis on October 11, 2013. Frankie cannot walk, talk, and will need a lifetime of constant supervision.
Although Frankie has endured through many tough circumstances… she is a loving, affectionate, smart and hardworking little girl. Her beauty shines from the inside out and she has a laugh that can brighten the darkest day. She loves music, especially Coldplay. She enjoys camping and being outdoors. Her favorite foods are salmon and blueberries.
Sparrow Cash raised for Frankie will help with ongoing medical expenses, travel to the Oakland Rett Clinic, OHSU, and everyday living expenses. Students at Summit High School will “earn” Sparrow Cash by completing a minimum of 256 hours of sponsored community service.