Jon and I are raising money as part of a group to help fund the research that is looking into the genetic cure for Rett syndrome.

Rett syndrome affects our lives every day. This is the genetic condition Georgina has.

Georgina showed no signs of any issues when she was born (other than being a cross little lady who did not want to be put down). We started to notice she was not hitting milestones, but it wouldn't be until her second seizure at 12 months old that any doctor began to listen to us.

It would be another 3 years of appointments and tests before we had an answer of Rett syndrome. Georgina has A-typical Rett syndrome. She did not develop as a regular child and then regress as they do in typical Rett syndrome. Georgina has never spoken and she was late in developing walking. However as she has grown she has lost most of her ability to walk.

Georgina stuggles with epilepsy, muscle and joint issues, immune weakness, breathing irregularities and difficulties with swallowing which can lead to other health complications. We joke we have frequent flyer miles with all the hospitals in the area and even make surprise visits to some further afield.

Georgina relies on a few makaton signs and her eyes to tell us what she needs along with her general stubborn nature 😁. The genetic therapy being explored at this moment may be able to unlock further communication for Georgina. For her to be able to tell us what's bothering her or what she needs would be amazing for all of us.

Please help us raise £100 for the funding pot. We will walk 100km with Georgina in her wheelchair over the weekends of May, June and July.