This is Rachel! She's 16-years-old and was diagnosed with Rett Syndrome in 2007; along with epilepsy and dystonia, (seizures and low muscle tone). She is wheelchair-bound, non-verbal, wears diapers, spoon-fed, and drinks from a cup, but someone must hold it for her.
Rachel was first identified as ‘Special Needs’ when she was 10 months-old and with Rachel in my lap, a total stranger said to me, “Your child will never be normal. She is Severely Multiple Impaired.” Then sent me on my way with a few numbers to call for therapy. It is beyond words, the void I felt that day, alone in the car, with Rachel in the seat behind me. Nonetheless, I became a warrior for my daughter.
Rachel almost died from the respiratory issues that come with Rett. She was sent home after 26 days in the PICU, on hospice in October 2014, just before her 10th birthday. We didn’t leave our home for 3 months; she and I, fighting together for her life. 1-1/2 years later, she came off of hospice. She is strong, pure, and beautiful beyond words. She had spinal fusion surgery in January 2019, again staying home for several months while healing.
Rachel loves to ride her bike, (special needs type). Her favorite things include: The Wiggles, anything Mickey Mouse and Princesses. She likes to be read too. She loves to watch people play games on their phones. Rachel enjoys camping, going to park to swing, and walking her dog; Karl.
Rachel has been using a TOBII eye-gaze to ‘speak’ for over a year and it’s amazing! She can ask for things, and tell me when she hurts. Rachel’s laugh is infectious, and her smile is astonishing.