Pete and Soph's Route 66 for Rett UK

This year we are taking part in the Route 66 virtual challenge https://www.endtoend.run/route66/. The route across America is 2278 miles long and I will be running/walking it and Pete will be riding the distance off road. We are aiming to complete it by the end of 2021 to mark our 50th birthdays!

We are raising money in aid of Rett UK and every donation will help. Gwen Carter, our niece, was born in July 2017 and lived her first few years in the USA. Her first year was relatively normal but then her parents (Jo and Jimmy) started to become increasingly worried about her development. This culminated, on the eve of Gwen and her families return to the UK, in a Rett Syndrome diagnosis in the summer of 2019. Rett Syndrome is a rare genetic postnatal neurological development disorder caused by a mutation on the X chromosome that causes a period of regression, leading to chronic impairments that will affect nearly every aspect of Gwen’s life. Specifically, Gwen has difficulties in the areas of motor function, upper limb/hand function, self-care, attention, listening and using verbal language and communication - and there is the potential for further deterioration over time. Now three and half, Gwen has an infectious smile, enjoys being in the outdoors and playing with ‘cause-and-effect’ toys and has a remarkable ability to walk, wobble and remain up-right. 

Thank you in advance for your contribution to this cause that means so much to us.

More information about Rett UK: Founded in 1985 Rett UK is the only UK charity which provides professional support to people living with Rett syndrome across the UK. Rett UK is a national charity dedicated to supporting and empowering people with Rett syndrome and their families. Our aim is that everyone with Rett syndrome is given every possible opportunity to achieve their individual potential so that they may live their life to the full.
Rett Syndrome—The Facts:
 Rett syndrome is rare. It effects between 1 in 10,000 and 1 in 15,000 of the population
 Rett syndrome effects mainly girls and women, but boys and men are effected too.
 Rett syndrome is caused by a genetic mutation, most commonly on a gene called MECP2. Similar conditions, often classified as a-typical Rett syndrome can be caused by mutations on other genes such as CDKL5 and FOXG1.
 Rett syndrome can occur in any family, the genetic changes that cause it occur randomly, you are not prone to Rett syndrome and there is nothing at present you can do to prevent it.
 Rett syndrome itself is not life threatening, but its symptoms are life limiting, common symptoms include epilepsy, scoliosis (curvature of the spine), breathing difficulties, a low immune system, hand wringing and other repetitive behaviour.
Most people affected by Rett syndrome do not walk and are unable to communicate via speech.
 Life expectancy in people with Rett syndrome is growing, early diagnosis, regular therapy and careful symptom management can lead to people living well into their 60’s and beyond.
https://www.rettuk.org/