I know what you're thinking... why is an overweight, out of shape, asthmatic former sprinter come coach, running 5km everyday for 50 days... 

Well the answer is simple... it's my turn to help raise money for Reverse Rett. 

In 2009 my friend of 20 years, Neil Fowler and his wife Gayle, welcomed a beautiful little girl into the world, Ciara.

For the first 6-7 months of her life everything appeared to be fine with her development. It was around this time that they started to notice that Ciara was not attaining her developmental milestones. In particular, she never started to crawl, she began to withdraw socially, she had no interest in toys, she could not use her hands, she would constantly grind her teeth, she would become anxious and distressed for no obvious reason, had difficulty eating food and exhibited extremely low muscle tone which caused her to be floppy, preventing her from being able to sit unaided. A subsequent referral to a Consultant Paediatrician triggered 18 months of clinical investigations at the Countess of Chester Hospital and Alder Hey Children’s Hospital, Liverpool. These investigations took the form of numerous blood tests, muscle biopsies along with Ultrasound, CT and MRI scans of her body and brain. All of these investigations failed to arrive at a diagnosis, though did eliminate a number of better known conditions and showed that structurally there was nothing wrong with her brain i.e. she was not brain damaged. The term ‘Global Developmental Delay’ was continually used by the professionals to describe Ciara’s situation. We were then referred to a Consultant Geneticist who was the first to raise the possibility of Ciara having Rett Syndrome. The day before Ciara’s 2 birthday (September 2011) we received the devastating news that the latest blood test confirmed that Ciara had Rett Syndrome.

As things stand there is no treatment or cure for Rett Syndrome. Life expectancy is significantly reduced and Ciara, along with all others girls, face the prospect of a life in a wheelchair and 24 hour 1:1 care. There is the likelihood that she will require tube feeding in the future and due to having low muscle tone will develop a spinal curvature (Scoliosis) which would have a detrimental effect on her ability to breath. Ciara already has a partially collapsed lung.

You can read more about Rett Syndrome and the research at http://www.reverserett.org.uk/

Also you can see more about the 5 x 50 Challenge at http://www.5x50.org

Thanks for taking the time to visit my JustGiving page.

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