My name is Alfie, i am 8 years old and suffer from a rare chromosome
disorder called MECP2 Duplication syndrome.
Alfie can not walk or talk, has profound and multiple learning difficulties, suffers from recurrent chest infections and has had bouts of pneumonia. He has epilepsy, motor stereotypies and is on the austistic spectrum.
He can not dress or feed himself and needs help with all aspects of daily living. He sufferes from severe constipation and reflux, has constricture of his lower legs amongst other problems and will almost certainly have a shortened life expectancy.
Despite all that he is the most amazing little boy who takes life in his stride, he smiles and laughs and has just learnt how to give hugs. He is an inspirational little boy who just happens to need lots of help along the way .
My family fundraise for me because I need specialist equipment to make
my life more comfortable.