I am grandma to beautiful identical twin girls Edie and Ivie who were both diagnosed with Rett syndrome in 2023 when they were 3 years old. The diagnosis although devastating was also a relief. We had watched the twincesses, who developed normally till they were 18 months old, regress over a period of months to becoming totally dependent and now we know why. I cannot describe the rollercoaster of emotions the whole family went through coming to terms with the diagnosis and the concerns we all have for the future challenges the twincesses will face.

Rett syndrome is a rare neurological and developmental genetic disorder that mainly affects girls. It is estimated that it affects 1 in 10 000 girls born each year. It is a complex condition and the affects range considerably for each child. There is no known cure.

There is hope.....

A gene replacement therapy clinical trial is underway in America,

Two companies have been granted approval to start clinical trials in the near future in the UK.

This is very exciting and hopefully will lead to a world without Rett syndrome in the future.

Reverse Rett is a patient advocacy and research organisation focused on accelerating treatments and a cure for Rett syndrome to everyone affected.

I am supporting this charity to help keep their work going and hopefully achieve its goal.

That is why I am walking the 100km south coast ultra challenge 7th and 8th September and I am extremely grateful for the support to help me achieve my fundraising goal

Please help this vision become a reality

Thank you

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