What is Rett Syndrome
Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, causing a progressive inability to use muscles for eye and body movements and speech. It occurs almost exclusively in girls.
Rett children seem to develop normally at first, but after about 18 months they start to regress.
They lose hand function, can no longer hold toys or feed themselves. By age three they could start having seizures, stop talking, walking and steadily their spine could start to curve.
By age three they could start having seizures, stop talking, walking and steadily their spine could start to curve.
Why I'm raising money for Rett UK
My auntie Philippa suffers from Rett Syndrome and has just celebrated her 55th Birthday.
Last year my lovely wife spent most of the year running in aid of a charity and this is something my Nana ( Philippa's mum ) picked up on.
She asked if I would put my love of running to good use and try to raise awareness and some money for the charity Rett UK - who have done a great deal not only to help our family but many others. How could I say no to my 92 year old Nana?
Philippa wasn't formally diagnosed with Rett Syndrome until the age of 25 and is one of the oldest people who suffer with the condition. She has been key to helping with diagnosis and moving treatment forward by helping to find the genes that cause the disability.
The charity have played a huge role in helping my Nana and Grandad with Philippa and for that I'd love to help support this great cause.
 |  |  |
|---|
Who are Rett UK
Rett UK is a parent led charity dedicated to making a real, positive and lasting difference to people living with Rett syndrome. They provide professional support services for families, carers and professionals.
They charities aims are to:
To support families and carers and ensure that all people with Rett syndrome have access to best practise in diagnosis, treatment and care.
To promote, support and encourage research into the genetic, therapeutic and social aspects of Rett syndrome and towards an eventual cure.
To increase the awareness of Rett syndrome and the issues facing all people with Rett syndrome, their familes and their carers.