Condition: Rett's Syndrome
City, State: Terrebonne, OR
Club: Tom McCall Elementary School Elton Gregory Middle School Sparrow Club Service Hours:
Date Adopted: 12/04/2012
Lilly's Story:Lilly was a few months old when her parents noticed that she was not developing we well as she should have. She also began chewing on her wrists. Eventually, she began to have physical tremors and her body would just start shaking.
Last summer, Lilly began to speak and would say lots of little words. But, suddenly, in the fall, everything began to change, this time even more dramatically. Lilly began to cry all the time. She would not sleep. Loud noises would send her into fits. She stopped walking all together and eventually stopped talking as well.
At her one year check up, doctors began testing to try to pinpoint Lilly's problems. Lilly's parents were devastated when they learned their daughter had Rhett’s Syndrome.
Rhett’s Syndrome is a very rare disease that affects only about 4000 girls nationwide. It is a neurological syndrome that affects every aspect of development. Currently, Lilly has entered into the second stage, where she has lost most of the skills she had developed earlier. Doctors say that around age 3, she should begin to enter the next stage and that she would remain there for the majority of her life. During this stage, it is hoped that she may begin to relearn some of the skills that she has lost.
Her parents are hoping that one day Lilly will learn to talk again. Right now they are working on alternate ways for her to communicate. They are also hoping that she will walk again. In the meantime, Lilly spends her days surrounded by her parents and her two older sisters. She loves to be touched and spend time in the pool. Her smile lights up a room.
Sparrow Cash raised will help purchase a communication device so that Lilly can interact with those around her. It will also help with ongoing therapy expenses as she works to regain the skills she has lost.