On October 19 th 2017, her parents Joe Trippodo and Josie Clark- Trippodo received the devastating news after months of searching for answers that Charlie has a rare and random genetic disorder- Rett Syndrome.
Rett Syndrome is a rare genetic disorder caused by a random mutation of the X chromosome - MECP2 gene. The disease causes rapid developmental regression in mainly girls which robs them of speech, fine motor skills, purposeful use of their hands, and the ability to walk. It may also lead to scoliosis, arrhythmia, breathing difficulties, and a host of other symptoms as these girls progress through life. Charlie is a very bright and fun social girl whose brain does not allow her to speak and move as she desires causing her to be trapped in a sense in a body that fails her.
With the help of her parents and therapists Charlie works extremely hard everyday with a rigorous schedule including daily physical therapy, speech therapy and occupational therapy to help her reach her full potential. Charlie is a fighter and we believe with the right tools we will be able to see our sweet girl walk and maybe run or dance, we want more than anything to hear her beautiful voice and hear what fun and silly things she has to say.
Charlie has recently started attending a Rett's clinic in New York City where she is able to see amazing specialists. We are hoping to receive a device called a Tobii (cost: $20,000) which will help Charlie communicate her needs and thoughts to us. Unfortunately, multiple daily therapies, trips to specialists and to the clinic will be apart of both Charlie's childhood and adulthood. Expenses for doctors appointments, therapy, dental procedures (cost: $8,000) supportive braces, home therapy equipment, special needs education, and travel to New York to her Clinc are not fully or close to being covered by insurance. These are necessary expenses to give her the best possible chance at a quality life that this awesome girl deserves!
Rett Syndrome is a daily battle, and a lifetime challenge. Until a cure is found, your help is appreciated beyond anything words can express. Charlie has great promise and is a fighter with a heart of gold. We don't want to place limits on her and feel the more work we put in the better the outcome.
Together we can help this wonderful family and beautiful girl by being one of Charlie's Angel's!
You can learn more about Rett Syndrome at : RettSyndrome.org
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