Thanks for taking the time to visit my JustGiving page and donating money to the Rett Syndrome Association UK.
I have a daughter Olivia (aged 7) with Rett Syndrome.
Rett Syndrome is a severe neurological disorder caused by a random genetic mutation. It affects mainly girls. Rett girls appear normal at birth and follow a normal developmental path until about 6-12 months of age when they start to lose skills they have previously developed and regression sets in.
Whilst there is variability in the severity of the disorder, most people with Rett syndrome have profound physical and learning disabilities and are highly dependent on others for all their needs throughout life. The strain placed on family life through have to look after a Rett girl can be enormous.
In Olivia's case the severity is classic. She cannot talk or walk and has close to no voluntary control of her limbs. She has various medical problems which create ongoing health issues. She needs constant 1-on-1 care.
Whilst Olivia's life is tough and often times she is sad or upset or in pain she also shows great happiness. The picture above from a couple of years ago shows her in one of those happier moments.
Your donation will help the Rett Syndrome Association provide support to people affected by Rett Syndrome and contribute to funding for research with the aim ultimately of finding a cure.
