Until her first birthday, Dylan was like any other little girl - happy, loving and desperate to explore the world around her. Then things started to change - she lost her speech, her mobility and her interest in life. She was in pain physically and psychologically and we could do nothing to help her. Shortly after her second birthday, Dylan was diagnosed with Rett Syndrome. A tiny mutation to a single gene has condemned her to a life of profound disability and total dependence. She is locked inside her body, unable to communicate. There is no doubt that it is one of the cruellest diseases and, as parents, the hardest thing is knowing that things will get worse. Dylan faces the prospect of epilepsy, severe spinal curvature, life-threatening breathing problems, feeding difficulties and attacks of acute anxiety.
But there is hope. Remarkably, Rett Syndrome has been reversed under laboratory conditions. Scientists predict that it will be the first curable neurological disorder. The problem is that, despite the enormity of this potential, there is no government or lottery funding into research. This is because Rett Syndrome is a rare disease which affects only about 1 in 10,000 girls. But this attitude is flawed for two reasons. Firstly, on a human level, girls like Dylan should not be ignored because they have had the bad luck to have been born with such a devastating condition. Secondly, if a cure for Rett is found, it will go a huge way to finding cures for more common neurological disorders like cerebral palsy, Parkinson's and autism. A cure for Rett Syndrome is the gateway to finding a cure for these conditions. The difference is, with Rett Syndrome, there can be an intense and highly-targetted approach. We know which gene is faulty. We think we know how to restore the gene to health. The only thing holding back a cure is money. Researchers are wholly reliant on private donations from people like you.
You are the difference between a life sentence for girls like Dylan and a life of hope and fulfillment.
Please give generously - either as a lump sum, or even better, a monthly donation.
Every penny will go to the Rett Syndrome Research Trust - whose aim is to find a cure within the next 10 years. #mce_temp_url#
Please help them to help us.
For more information about Dylan and Rett Syndrome please visit www.curefordylan.com
We would also love to hear from you at #mce_temp_url#
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Marc & Jenny