RETT Syndrome is a rare neurological disorder that primarily affects girls and very few males. People with RETT syndrome have profound and multiple physical and communication disabilities and are totally reliant on others for support throughout their lives.

Our daughter Emily has RETT syndrome and was diagnosed at 2 years 6 months old. Emily is now approaching her 13th Birthday, she attends a specialist school, horse rides, loves Mr Tumble and has one of the most amazing smiles you've ever witnessed.

Our family life has dramatically changed since her diagnosis and we are learning constantly as this genetic disorder evolves and changes happen with time, during puberty and beyond. At the heart of it all, we are a close family unit with Emily's siblings Chloe and Charlotte acting as proud older sisters, as well as young carers. Emily requires 24 hours a day care and supervision and will do for the rest of her life. We strive to help her learn to communicate effectively (with her eyes and body), stay active and lead the most fulfilling life she can with as much autonomy as is possible.

RETT UK have been our lifeline, from information, to support and enabling us to network with families just like ours who have real lived experience of this condition.

This journey for us all if life long and we would like to give something back to RETT UK to help support the amazing work they do for children and adults with RETT syndrome.

Brian and I have decided to push our old bodies for the second time ever around 26.2 miles in Paris France, the country we married in. It is a huge challenge for us to commit to, however, with the challenges our children face every single day, it's the least we can do.

If anyone has any spare pennies they want to donate to support two parents in this challenge, it would be so appreciated!

From RETT UK:

Rett syndrome is devastating for a family. Having suspected something was not quite be right, suddenly they are told their child will be profoundly disabled, with multiple health problems including epilepsy, a curved spine, breathing problems, feeding difficulties and gut/bowel issues.

Rett UK is there to pick up the pieces; emotional support, high quality, accurate advice & information, advocacy, reducing isolation, empowering families, building emotional resilience and helping the person with Rett syndrome live a life worth living.