Georgia is my hero, she is a beautiful and intelligent young lady, who through a genetic default which prevents a protein being produced in the brain leaves her trapped in a body which can’t function properly.

Georgia was born a happy, healthy little girl all be it a month early. We started to notice around the age of 9 months that she wasn't then hitting milestones quite as she should. By 18 months she was still unable to pull up to stand, something she only ever went on to do once. She was able to use her hands to eat finger food and some control of a spoon. At first they thought her hips were causing the delayed walking but then her hand dexterity began to show signs of going backwards. 

She had an MRI which didn't show anything unusual and so her neonatal consultant suggested some genetic testing which ended up be very long winded. 3 months before turning 4 we received Georgia's diagnosis of Rett Syndrome, we were completely heart broken but determined to do what ever we could for Georgia. 

 Georgia is unable to walk or use her hands and cannot speak. She speaks through her eyes which leads to a lot of guess work on our part at times. Other conditions it has lead to are epilepsy, scoliosis. She could develop breathing difficulties, difficulty in eating requiring tube feeding amongst the long list of symptoms caused by Rett Syndrome.

Research is moving forward, Reverse Rett has helped to fund, clinical trials of disease-modifying therapies which are under way. The first gene therapy clinical trial for Rett Syndrome is taking place now in Canada in adults, a trial in children will be starting in the US and hopefully the UK with in the year. 

That doesn’t mean the job of research is done, it’s not any less important to keep funding research and treatments. If anything it is more important.  

Georgia is now 13 and has faced challenges everyday of those 13 years. That is why I am challenging myself, at the end of August I will be taking on the varied elements of the Icelandic wilderness from rugged terrain to crossing through glacial rivers. Covering 54km in 3 days camping along the way. For me this is the toughest challenge I have taken on yet.

I understand people are feeling the pinch in their pocket and having to be careful but that pinch is felt by charities too especially the smaller charities which also don’t get any government funding or the public exposure larger charities get. Any donation, however small that may be, adds up enabling the charity to support helping families and funding research and treatments.

Thanks for taking the time to visit my JustGiving page and thank you for donating xxx

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