On October 19th 2017, Charlie's parents Joe Trippodo and Josie Clark- Trippodo received the devastating news that after months of searching for answers Charlie has a rare and random genetic disorder called 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 team of therapists and doctors 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 and continued research in hopes of a cure 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. Unfortunately, multiple daily therapies, trips to specialists and to the clinic will be apart of both Charlie's childhood and adulthood. Expenses for Charlie are not even close to being covered. We are trying to build Charlie a bedroom and therapy/sensory room downstairs as well as make her a large handicap accessible bathroom on the ground floor. All of this is necessary 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
09/18/2018Charlie’s Angels: Goal Complete$50.00
09/21/2018Charlie’s Angels: Goal Complete$200.00
Our goal for Charlie is for her be the best Charlie she can be. We will not limit her. She already attends 9 different therapy sessions a week. Therapy is very important for Rett's Girls because it will keep her progressing and help prevent her from regressing.
That being said we need to make sure that Charlie has a bedroom on the ground floor. Even if Charlie reaches her goal of taking steps, going up and down stairs will be hard for her and we want to make life for her as easy as we can. As she gets older it will be harder and harder to go up and down the stairs with her.
We also want to build a therapy room so Charlie can have the proper space and equipment to accomplish all of her therapies each day. This therapy room will include a place for all of her equipment, sensory items and toys, and different swings. Swings are especially important for Rett's Girls. The motions calms them and provides them much comfort.
Our last project for Charlie is to make our downstairs bathroom handicap accessible. We live in a old house and our bathroom is small. We will need something that will accommodate Charlie's needs now and into the future.
These three projects will cost us around $75,000. We so badly want to provide all of this for our Charlie. She deserves it and it will help her every day of her life.
We really want to turn our house into a "home" for Charlie. In our home Charlie will be comfortable and not have to worry about hurting herself or not having enough space for all of her therapies.
Ultimately we want what every parent wants for their child; to be HAPPY.