Every 5 hours a girl is born in the world with Rett Syndrome, a rare neurological disorder that effects mostly girls. Present, but undetected at birth, most children, as did Rachel, meet their early developmental milestones. Then we watched as Rachel started to lose skills quickly, to the point she does not talk, walk, have fine motor skills, meaning she has no control over her hand movements and is dependant on us for all her care. Rachel has many complex health needs including suffering from epilepsy, which has meant she and we have spent a lot of time in hospital. Throughout Rachel’s and our journey Rett UK have been there for us, providing advice and support on all aspects of Rachel’s life.

Rachel is a very happy young lady, loves her day college, swimming, being with her family,  being read to and using her eye gaze technology. We feel very lucky that Rachel is our daughter and have learnt so much caring for her.

I am a keen runner and would be delighted if you could support Rett UK through me running the Great North Run.

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