Emily Matthews Our Aicardi Princess

My name is Emily Matthews, I am 2 years and I have Aicardi Syndrome.
Aicardi Syndrome is a rare neurological disorder. With this I have no Corpus collosum, both hemispheres of my brain are malformed, my retinas are also malformed which causes me to have poor sight. I have Epilepsy Encephalopathy with Infantile spasms, I have anything between 15-30 seizures everyday. I have low muscle tone so I can not sit and have no strength in my muscles, I still cant hold my head up. I have been told I will not walk or talk, I will never be seizure free and they will get worse. I have also been told that the doctors will do their very best to help me reach my teens at least. I need help with lots of equipment like seating and equipment for my pushchair and home, we are trying to fundraise to helpget a deposit for a wheeelchair vehicle, to buy a bath and have it put in and on a plinth for my wet room when its complete, for supplies that cannot be funded elsewhere, unfortunately this need never stops and as much as we would love to fund everythinv ourselves and not have to ask for help we cant.