Little Addison Read has Rett Syndrome.
If you have arrived at the page then you might know something about the reasons Addison needs funds right now. Please give what you can afford. You feel great when you give.
Rett Syndrome is a developmental disorder that is almost always found in girls. It’s occurrence is around 1:10,000 live births. It is the result of a genetic mutation at the time of conception on the X chromosome. The mutated gene is responsible for telling other genes when to activate or inhibit our precisely regulated brain function. This results in areas of the brain responsible for cognitive, sensory, emotional, motor and autonomic function being disrupted.
The child with Rett Syndrome is usually born healthy and shows an early period of normal or near normal development until 6-18 months, when there is a stagnation of skills. A period of regression follows when she loses communication skills and purposeful use of her hands. Over time girls develop learning and speech difficulties, seizures, sensory and mood changes, movement issues and breathing, cardiac function, digestion, chewing and swallowing can be affected.
The most severely handicapping aspect of Rett Syndrome is the inability to program the body to perform motor movements. Imagine wanting to say something but not being able to program the muscles to make that happen, imagine wanting to run with little girls your age but being stuck in a wheelchair because you can’t get your body to move and imagine being reliant on others to have your simplest needs met. This is what life is like for Addison.
Addison cannot speak, in fact, she has never spoken a word. Imagine what this would mean to her parents, Trent and Narelle.
Her parents have been tirelessly raising funds and awareness for Rett Syndrome however not all of what they have raised has gone directly to helping them. They need so many things to make Addie's life even functional let alone enjoyable. There are modifications to be made to their home, a hospital type bed for Addison and a new car to transport Addison and the rest of their family members.
I'm seeking your help to raise funds for some technology that will allow Addison to communicate with her parents and the rest of the world. Despite all her seizures, lung problems, broken legs, swallowing issues, inability to sit up, walk, use her hands, she is a very smart little girl and happy little angel trapped in a body that just doesn't work.
No matter how hard she tries Addie will never be able to talk, but an opportunity exists for her parents to hear what she has to say. Her eyes and smile tell her parents so much every day. That opportunity is Eye Gaze technology.
I'll be posting as much info about Eye Gaze technology on this page as I can find. Please feel free to private message me anything you might feel will help my cause and little Addison.
Please only give what you can afford. Your generosity is appreciated. You're probably reading this because you know me which means I probably already think you're a brilliant person. For everyone else I'm ready to tell you that too.
Nick Murray
God Bless you!