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1322 %
raised of £250 target
by 92 supporters
Jill Spence avatar
Jill Spence

Jill and linda run4retts

Fundraising for RETT UK

1322 %
raised of £250 target
by 92 supporters
  • Event: Bupa Great Edinburgh Run 2012, 07 Oct 2012


We change lives and give a brighter future to those affected by Rett syndrome. Now.

Charity Registration No. 1137820


Thanks for taking the time to visit my JustGiving page.On October the 7th  Sophies Aunty Linda  and I have decided to dust off our trainers, pop on some lycra  and run the streets of  Edinburgh  in the 10k to raise money and awareness for  Rett UK,  a charity very close to my heart.

In July 2008 our beautiful Sophie Lou at the age of three was diagnosed with Rett Syndrome, it's a neurological disorder that mostly affects girls and very rarely boys. One in every 10,000 girls are born with Retts.

Although present at birth its usually undetected until the milestones your child is expected to reach don't or skills that they've acquired disappear accompanied with anxiety and distress.The list is endless from losing the ablity to walk or never reaching that milestone before a regression takes place, not being able to communicate, drifting away and losing hand function.  

We were totally devestated,  I remember the day we got Sophies diagnosed, it's vividly etched in my mind . We were told to go and look into how this would change Sophie's life and given a very brief leaflet about the condition. Alan and I knew that Sophie was struggling to communicate  and that she wasnt able to use her hands to do the things she wanted to do. She contantly cried  and was so upset all the time, but nothing could  ever prepare us for the world of Retts.

Sophie is my Rett rebel as I love to call her by, every day is a challenge for Sophie, she needs constant support to help her understand the world that alot of us just take for granted.

She can be the most loving girl throwing her arms around you to feel close and safe,  she has the biggest screaming tantrums ,she's got the most infectious laugh  and her eyes melt your heart even though she has no spoken words her eye's speak volumes to me.

Rett is the only known neurological disorder that scientists are on the verge of finding a cure for, the potential is out of this world.

Research has given us hope, scientists have been able to cure Retts in mice and switch the faulty gene off . I hold on to the thought that one day within Sophies life time that there will be a cure and that one day I'll be able to hear her say hello again.

Your support  is so important, even more so at this moment in time while our economy is struggling and small charities like Rett UK could disappear, they provide a life line for families - a warm voice on the end on a phone that can pick you up when you are in a dark place. giving lots of treatment advice and care and up to date information on the latest break through in Rett Syndrome research.

If you would like to find out more about the wonderful work that Rett UK do please visit their web site at

By making a donation would be helping us, Sophie and other girls and families all over the UK and the world.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.thank you so so so much 


  • If she could she would be saying a massive thank you to each and every one with a huge hug for all the funds you've raised for rett uk ! Only four weeks to go !!!! The count down begins +3