Story

On May 10th 2014 a team of us will be walking 20km, 40km or 60km across the South Downs  to help speed treatment for Rett Syndrome and MECP2 disorders.  Also, two of our team members; Jess and Kym, will be running the London marathon on 13th April as a little warm up!

Until her first birthday, Lily was like any other little girl - happy, loving and desperate to explore the world around her. Then things started to change - she lost her speech and her interest in life. Lily was in pain physically and emotionally and no one could give any answers.

Shortly after her second birthday, Lily was diagnosed with Rett Syndrome. A tiny mutation to a single gene has condemned her to a life of profound disability and total dependence.

Lily is locked inside her body, unable to communicate. There is no doubt that it is one of the cruellest syndromes and, as parents, the hardest thing is knowing that things will get worse. Lily faces the prospect of epilepsy, severe spinal curvature, life-threatening breathing problems, feeding difficulties and attacks of acute anxiety. 

But there is hope. Rett Syndrome has been reversed under laboratory conditions.

Scientists predict that it will be the first curable neurological disorder.

The only thing holding back a cure is money.

Researchers are wholly reliant on private donations from people like you.

As a family we have watched our brave little girl fight with determination  each and every day.  Please help us to help her.

 For more information about Lily and her Journey with Rett Syndrome please watch this video 

https://vimeo.com/84677189

Thank you

 

Kerry, Colin, Ruby, Lily and George x 

Updates 5

Just wanted to say a huge THANK YOU to everyone who has donated. We are overwhelmed with the generosity and kindness of everyone :o)

25/03/14 14:08

£6,500 in just over 2 weeks...incredible! Thank you all! We've raised our target again and hope to meet it before the walk in May! The money raised goes directly to research to help Lily and other little ladies like her. Thank you for helping us make a difference to their future

07/02/14 09:29

Late last night we hit our 3rd target of £3,500, thanks to Chris who donated a huge amount. We are speechless and so grateful we can not thank you enough. We will up the target again to try and raise as much money as possible for Lily and girls like her.x x

26/01/14 09:33

We hit our 2nd target thanks to family, friends and caring members of the public! Time to raise our target ;o)

25/01/14 14:07

Thanks so much everyone! we have put our target up to £2.5k as we hit our £1k target in less than 24 hours! Amazing! Thanks again x

22/01/14 20:27

Raising money for

Reverse Rett

Reverse Rett

Charity Registration No. 1136809

Reverse Rett is the only UK charity working exclusively to accelerate treatments and cures for Rett Syndrome and related MECP2 disorders. Driven by parents, we ensure that 95p in every pound raised directly funds research projects focused on giving our children a better future.

Donations 304

Wishing you all the best. We are so proud of you all.

Donation by Mum & Dad (Hall) on 20/04/14

All the best Kate and others.

Donation by Chit on 20/04/14

£30.00

+ £7.50 Gift Aid

Good luck to the team and I hope you exceed your target xx

Donation by Heidi Trencher on 19/04/14

£10.00

+ £2.50 Gift Aid

Donation by Anonymous on 19/04/14

Donation by Anonymous on 17/04/14

Donation by Anonymous on 15/04/14

£10.00

+ £2.50 Gift Aid

Congrats Jess & Kym. A very worthwhile cause. Shadey x

Donation by Matt Shade on 15/04/14

£10.00

+ £2.50 Gift Aid

Well done Kym and Jess from Andrew MORRISSON, friend of Russ and also you Kym when you worked at our office. Kind regards....Andy.

Donation by Andrew MORRISSON on 15/04/14

£20.00

+ £5.00 Gift Aid

Donation by John on 14/04/14

£10.00

+ £2.50 Gift Aid

Well done Kym and Jess. I'm a friend of your dad, Kym, Now the ultimate challenge is getting him to do it next year. Good Luck to Lily and her family

Donation by Tubbs and Corinne on 14/04/14

£10.00

+ £2.50 Gift Aid

Hi Kym, it's Spencer Cole your second cousin. We'll done today and also to Jess.

Donation by Spencer Cole on 13/04/14

£10.00

+ £2.50 Gift Aid

Donation by Anonymous on 13/04/14

£100.00

+ £25.00 Gift Aid

Donation by Anonymous on 13/04/14

£100.00

+ £25.00 Gift Aid

Good luck Kim.

Donation by Si & Jak Henderson. on 13/04/14

£10.00

+ £2.50 Gift Aid

Hi I am a friend of Kym's Dad Russ. Best wishes, hope you meet your target and here is our little bit to help. Andy and Val (7897)

Donation by Andy and Val on 13/04/14

£10.00

+ £2.50 Gift Aid

You go girl! Enjoy and run through that wall

Donation by Stuart Spicer on 13/04/14

£10.00

+ £2.50 Gift Aid

Good luck Jess!!! I don't envy you

Donation by Anonymous on 13/04/14

£10.00

+ £2.50 Gift Aid

Good Luck in the Marathon Kym!! What a champ you are, just like your Dad.... not...lol!! All our love, what an amazing cause youre running for! Heartfelt wishes to Lily and her family xx

Donation by Aus Berryman Family on 13/04/14

$100.00

Donation by Anonymous on 12/04/14

£20.00

+ £5.00 Gift Aid

Donation by Adrian and Marc on 12/04/14

£10.00

+ £2.50 Gift Aid

ThumbsUp.png

Good Luck to you both - have a good run! LoLove Sue & George xxx (Mum's cousin)!

Donation by Susanne Redden on 12/04/14

£10.00

+ £2.50 Gift Aid

Good luck to you both from (more) friends of Kym`s mum and dad. If you are like them, you`ll do it with ease!

Donation by Brian and Marilyn on 12/04/14

£10.00

+ £2.50 Gift Aid

Am a friend of Kym's dad Russ and wish Kym and Jess good luck tomorrow.

Donation by Thomas French on 12/04/14

£10.00

+ £2.50 Gift Aid

Hi, am a friend of Kym's dad Russ and wish Kym and Jess good luck in tomorrow's marathon.

Donation by Michael connolly on 12/04/14

£10.00

+ £2.50 Gift Aid

I am a friend of Kym's dad russ, hope to see you there, my son is also running, so will be up in town, so good luck Kym and Jess.

Donation by Brian Partiridge on 12/04/14

£10.00

+ £2.50 Gift Aid

Donation summary

  • * Online donations£12,865.00
  • Offline donations£100.00
  • Text donations£0.00
  • Total raised£12,965.00
  • Gift Aid£2,761.57

* Charities pay a small fee for our service. Find out how much it is and what we do for it.