Rett syndrome is a brain disorder that occurs almost exclusively in girls. The most common form of the condition is known as classic Rett syndrome. After birth, girls with classic Rett syndrome have 6 to 18 months of apparently normal development before developing severe problems with language and communication, learning, coordination, and other brain functions. Early in childhood, affected girls lose purposeful use of their hands and begin making repeated hand wringing, washing, or clapping motions. They tend to grow more slowly than other children and have a small head size (microcephaly). Other signs and symptoms that can develop include breathing abnormalities, seizures, an abnormal side-to-side curvature of the spine (scoliosis), and sleep disturbances.
We have started this fund to raise money for all the things that Nell will so desperately need to enable her to have a more comfortable, supported and happy life.
50% of the funds raised will help towards the purchase of a Tobii Eye Gaze which will allow Nell to learn & communicate using her eyes.
The remaining funds we will be donated to reverseretts.org.uk a charity working to accelerate treatments and cures for rett syndrome. Whilst there is no treatment or cure for Rett Syndrome and this cruel condition will take Nell away from us bit by bit, it has been reversed in mice. It is not a degenerative disease. It has been shown that if the missing protien can be replaced then the loss of skills can be undone. Scientists are working hard to find a solution to make Rett Syndrome the first neurological disorder to be treatable.
Thank you for taking the time to read this page aswell as raising funds it is important to us to also make people aware of this rare condiiton.
Thank you from the bottom of our hearts.
Adam, Debs & Nell x
- Geoff Eaton
- Vicky Rogers
- Bev Tallon
- louise tupling
- Lee Summerfield
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