I am 4 years old (nearly 5) and I am missing part of my brain. The part I'm missing is called the Corpus Callosum (ACC) and its the control centre between the left and right hemisphere of my brain. I also have a condition called microcephaly. This was all caused because of a defective gene called the "Cask" Gene.
The doctors told my mummy and daddy that I may not survive when I was born. They also said that it was likely that I wouldn't be able to walk or eat (other than through a tube) or be able to talk.
My mummy and daddy did a lot of research and did not accept what some of the doctors had said. They got me onto intensive therapy really early. My mummy takes me to my therapies every day of the week. She also takes me to intensive therapy programs. My mummy had to leave her professional career to look after me and to make sure that I got to all my therapies.
I love my mummy and daddy very much, and I know my mummy and daddy love me just as much.
My parents believed in me. They always believed that I would walk, eat (feeding myself) and talk.
Because of their hard work (especially my mummy) I have learnt to walk, eat and I can say a few words.
My mummy and daddy have been told that my brain will stop growing and that is why I have to continue with therapy daily to make sure that my brain has as much information in it before this happens. My mummy and daddy were also recently told that my condition is considered degenerative. This means even though I have made so much progress, one day I may slowly start to forget how to walk, talk and eat (this is based upon recent scientific research from both the United States and Japan).
My mummy and daddy have set up this foundation to help me and children (and older people) like me to improve our quality of life and hopefully one day find a cure for this condition and help fix this Cask Gene defect.
I just want to be like every other little girl my age, please help my mummy and daddy help find a cure for kids like me so we can live a normal life.
Thank you
Angelina M
(written with Mummy & Daddy's help)
