Hello, my name is Shannon. I am making this gofundme for my niece, Charley, who has Rett syndrome (description of this syndrome listed below). In hope to provide Lynn and Chad, her parents, with any type of financial support for a wheelchair accessible vehicle. Especially now! She is having spinal fusion surgery the end of July. It’s over a month of recovery! Proper and safe transportation has become significantly important as Charley continues to grow. Lifting Charley and taking her in and out of a car seat has become very challenging as she is getting older and heavier. Charley is 10 years old and is in 4th grade. This van would be life changing for Charley and her family. It would give Charley more access to the world around her. More socialization with family and friends, being able to travel together as a family. Easier access to her frequent Dr. appointments. Mom able to pick her up from school in emergency situations (seizures) and transport her home more efficiently. This will ease some of the physical and emotional strain of transporting her.

Charley was developing perfectly like any other child until she began to developmentally regress around 15 months old. She was diagnosed with Rett syndrome when she was only 22 months old. It was devastating to Lynn and Chad, and our family. She continues to amaze us everyday with her strength and love that she shows in her own unique ways. ❤️ Charley is unable to walk, talk, use her arms or legs, basically immobilized and wheelchair bound. Charley is the oldest of three. She has two younger siblings. Lynn is a stay at home mom to care for Charley. Daily care is an around the clock job consisting of regular check-ups and screenings to monitor her overall health. Including growth, scoliosis and heart problems. Daily medications for seizures, breathing difficulties, sleep problems, and other symptoms. Nutritional support, including a specialized diet and feeding aids. Charley is fed through a GJ tube to address gastrointestinal issues and ensure adequate nutrition. Physical therapy to maintain mobility, improve balance, and prevent complications. Speech therapy to help improve communication skills, including non-verbal communication and eye gaze technology, to support communication with her amazing strong willed mother by her side. Due to multiple daily seizures along with her continuous growth, it is becoming difficult for Lynn to lift Charley on her own, it is safest for her to remain in her wheelchair during transportation for both Charley and her parents.

We would appreciate any support for Charley and her family. Your generous donation will go towards the cost of a wheelchair accessible van. The goal of this gofundme is to make a difference in Charley’s life and help make life a little easier for the family’s day-to-day activities. Thank you for taking the time to read, and thank you for any donations. Anything helps ❤️

Rett syndrome (RTT) is a rare and devastating neurodevelopmental brain disorder that impacts nearly every aspect of an individual’s life, including their ability to speak, walk, eat, and even breathe. It’s similar to having Symptoms can begin as early as 6 months old when parents begin to see their child miss development milestones and lose abilities they had already gained. Rett syndrome is not a degenerative disorder.

What causes Rett Syndrome? Rett syndrome is a genetic disorder, caused by a spontaneous pathogenic variant—or mutation—in a gene called MECP2 that is located on the X chromosome. This gene is important for brain development and for activating and deactivating other gene functions. When the MECP2 gene does not function properly, it can cause issues throughout the entire body. These mutations usually occur spontaneously and are typically not inherited, making Rett syndrome a sporadic genetic condition. They result from random changes in the genetic code that happen around the time of conception. Importantly, these mutations are not caused by anything the parents did or didn’t do.

There is currently no cure for Rett syndrome. According to the International Rett Syndrome Foundation, the average life expectancy for individuals with Rett syndrome is around 40-50 years.