Thanks for taking the time to visit my JustGiving page.

Although I run most days due to my dogs and school run, it is not a passion but a way of getting everything done in the fastest possible time.  Painful Time Management that allows me to eat lots of chocolate....every cloud has a silver lining! 

I have never done a charity run, but after reading Stevie's School Newsletter this week about one of her friends older sister, I was  overwhelmed by the sadness, strength and courage of the Johnson's family and want to do something to support the charity to help fund the research that gives them hope. 

REVERSE RETT - BY BETH JOHNSON

Imagine the symptoms of autism, cerebral palsy, Parkinson’s, epilepsy and anxiety disorders all in one child. This is Rett Syndrome.

Hannah was born in 2007 after a textbook pregnancy and completely normal delivery. For 18 months she developed normally and was a picture of health, happiness and everything any parents could ask for. But then things changed. Her hands started to shake, she began crying uncontrollably, she pulled out chunks of her own hair, and her development slowed. Between her 2nd and 3rd birthday, the skills she had acquired started to slip away – her hand function deteriorated, her words vanished, her mobility faltered. One month before her third birthday, on February 3rd 2010, after 9 months of tests, we were told she had Rett Syndrome.

We didn’t know then what Rett Syndrome was, but we quickly learned that it was far more devastating than we had feared. We learned that this little girl before us would most likely lose all her mobility, all her speech, all her hand function. We learned that she would develop epilepsy, scoliosis, digestive issues, breathing difficulties and heart problems. We learned that she would never read, write, skip, climb a tree, sing a song, ride a bike or have her own family. We learned that her future was one of regression, uncertainty and total dependence. We were broken.

But then we learned something else. We learned that in 2007, Rett Syndrome had been reversed in mice, and that a charity called Reverse Rett were working to fund research to replicate that reversal in girls. We learned that the hope for a cure is tangible, and that there IS an alternative possible future for Hannah. As parents, this became the only option – we needed to support this charity and do everything we could to help fund the research to make that future happen.

Hannah is now 9 years old and many of those difficulties we feared might happen have developed.  She has no words, her mobility is highly limited, her hand function is poor, her breathing is laboured, She has partial epilepsy and she is fully dependent on us for every basic function.  But she is also engaged, alert, sociable, sparkling and mischievous.  Rett Syndrome has locked her in to a body that betrays her mind every second of every day, but her brain is not damaged and she has the same potential as any other child, if we could only set her free.

Reverse Rett send 97p of every £1 we receive to research, pursuing both the ultimate goal of reversal as well as researching ways to alleviate particular symptoms in order to improve girls health and quailty of life.  The progress is immense and the momentum is gathering - it is a matter of 'when' not 'if,' we get there.  We rely entirely on committed parents, families and friends to continue supporting and fundraising to get us there as quickly as we can - our girls need the cure yesterday.

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If you too would like to get involved and do either a 5k or 10k run anytime, anywhere on the 14th, 15th or 16th October then visit https://www.webscorer.com/register?raceid=74160 for more details and sign up :-)

Thanks all xx