My Name is Evie-Anne & I am 3.5 years old, I have 1p36 Deletion Syndrome, a very rare genetic chromosome adnormality that affects me in many ways.
I see very very bright light's only, I am registered Blind, I have many forms of epilepsy, distonia, Eczema, asthma, gastro reflux and many other medical issues.
I am not allowed to eat by mouth, I am fed special forlulated milk, that means my body can digest it without working too hard, I am fed by gastrostomy tube directly into my tummy every 3 hours by a machine.
I have very low weak muscle tone, and I am completly wheelchair dependant, my Doctor's say I will never walk, talk or even sit up unaided, but what do they know hey?
You can learn more about me, and my condition from my website!
Last year my mommy & daddy gave all my christmas money to various childrens charity's in exchange for some specialist sensory equipment for me, it is expensive, and helps me to relax, it also helps me learn, I am currently learning with the help from the teachers at my special school to use a special switch which will help me to communicate with you. It also helps me to use the tiny bit of sight that my eyes do have, I love to watch the bubble tubes and there colours shine brighly, I always smile and laugh whenever I am in a sensory room.
My mummy & daddy are raising money to get a instulated wooden cabin in the garden to turn into my very own sensory room, this will mean that I can use the equipent and learn everyday instead of just on occasions when I can use the school facilitys!
Please help by donating as little as £1, every penny helps, and every little girl deserves to smile !