Condition: RETT Syndrome
City, State: Redmond, OR
Club: Elton Gregory Middle School Tom McCall Elementary School Sparrow Club Service Hours:
Date Adopted: 1/04/2016
Lilly is a social, happy, and princess loving five-year-old. When Lilly was about 5 months old, her parents, David and Becki, noticed that she was not developing like she should have and was not hitting the normal milestones. She would have blank stares and tremors that worried her parents. Lilly eventually started to army crawl, rolling over and sitting up; slightly easing the minds of her parents.
At one-year-old, in the late fall of 2011, 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 in a three-day period.
At 13 months old, doctors began genetic testing to try to pinpoint what had caused Lilly to have such a regression in her behavior. On December 29th, Lilly's parents were devastated when they learned their daughter had Rett Syndrome.
Rett Syndrome is a rare, random genetic mutation that affects only about 4000 girls nationwide. It is a neurological syndrome that affects every aspect of development. Lilly has now been battling this terrible syndrome for four years now. Rett Syndrome typically shows four stages. In the first, development is fairly normal. The second stage, shows a loss of many skills, walking, talking, loss of functional hand use replaced by hand clapping/hand to mouth movements, and loss of the ability to swallow properly thus causing many aspiration pneumonias and related illnesses, and so much more.
Lilly has now entered the third phase, which is the stage of trying to gain back as many skills as possible through therapies. Stage four is the stage of slow decline and aging.
Lilly had a G-Tube surgery in February 2014. Unfortunately, after the surgery she has been more prone to seizures. 80 percent of girls who have been diagnosed with Rett syndrome struggle with seizures.
Lilly travels to Oakland childrens hospital 1-2 times per year to visit with her physicians that specialize in Rett treatment. She, also, is part of the Natural History Study of which doctors from around the country come together to gather data about the girls with Retts in order to help find a cure
Lilly is a busy little girl, but between hippotherapy, aqua therapy, occupational therapy, physical therapy and speech therapy, She enjoys being outside in the wind. Lilly is a very intelligent little girl. She understands everything that is going on around her and everything that is being said.
Lilly loves being surrounded by her parents and her two older sisters, as well as to be on the playground and to spend time in the pool. Her smile lights up a room and is an absolute joy to be around!
Sparrow Cash raised will help purchase an updated communication device so that Lilly can interact with those around her. It will also help with ongoing therapy expenses as she works to get stronger and build up the skills she has lost.
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