Story

Thank you for visiting Lily's fundraising page. 

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 7

A party held in aid of Lily raised in the region of £1,400! Thank you everybody x x

15/09/14 09:04

Team Lilypad completed 538km between us all on the 10th May. Thank you for all of your support, every step was worth it knowing the incredible support we had from everyone who generously donated xx

12/05/14 03:54

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 02:08

£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

Raising money for

Reverse Rett

Reverse Rett

Charity Registration No. 1136809

Reverse Rett works to speed treatments and a cure for Rett Syndrome and related MECP2 disorders by funding research that will have a practical and positive impact on our children’s lives. We fund more Rett research than any other UK charity: delivering over £2.5million in just 4 years.

Raising money for

Run by Reverse Rett

Charity Registration No. 1136809

Donations 498

lots of love xx

Donation by Lisa Marshall on 23/06/15

£10.00

+ £2.50 Gift Aid

Lots of love x

Donation by Gran & Grandpa on 14/06/15

£50.00

+ £12.50 Gift Aid

Big hugs xx

Donation by Anonymous on 12/04/15

With love xxx

Donation by Becky Boyle on 21/02/15

£20.00

+ £5.00 Gift Aid

Donation by Anonymous on 09/02/15

£5.00

+ £1.25 Gift Aid

As promised for doing dry January and money from my mum xxx

Donation by carlie on 03/02/15

£135.00

+ £33.75 Gift Aid

For Carlie's dry Jan

Donation by Anonymous on 02/02/15

£20.00

+ £5.00 Gift Aid

well done carlie x

Donation by merv on 02/02/15

£10.00

+ £2.50 Gift Aid

Well done Carlie! Such a good cause x

Donation by Fay on 02/02/15

£20.00

+ £5.00 Gift Aid

It was hard wasn't it schaller? !

Donation by Stephanie x on 02/02/15

£20.00

+ £5.00 Gift Aid

From the sale of Charlotte's CDs :)

Donation by Anonymous on 01/02/15

£30.00

+ £7.50 Gift Aid

Well done Carlie!

Donation by Tash Needham on 01/02/15

£10.00

+ £2.50 Gift Aid

Well done Carlie. Well deserved x

Donation by Hayley Stubbs on 01/02/15

£20.00

+ £5.00 Gift Aid

With love x

Donation by Susan Hollington on 01/02/15

£5.00

+ £1.25 Gift Aid

Well done Carlie, a great cause for a beautiful little girl xx

Donation by Charlotte Wall on 01/02/15

£10.00

+ £2.50 Gift Aid

Well done Carlie for dry January! Lots of love to Kerry and her beautiful family 💗

Donation by LJ on 01/02/15

£5.00

+ £1.25 Gift Aid

Well Done Carlie - very impressed!

Donation by Lisa on 01/02/15

£30.00

+ £7.50 Gift Aid

much love

Donation by Anonymous on 10/01/15

Donation by Anonymous on 06/01/15

£10.00

+ £2.50 Gift Aid

not done any fundraising or sponsored anything yet, but hopefully better late than never :-). phenomenally amount you guys have raised Kerry, you superhuman you!

Donation by Helen Bashford on 06/01/15

£100.00

+ £25.00 Gift Aid

With love x

Donation by Susan Hollington on 04/01/15

£5.00

+ £1.25 Gift Aid

Over half way to your target. I am so proud of you all. You are an amazing family. Love you xxx

Donation by Jen Hull on 04/01/15

£10.00

+ £2.50 Gift Aid

In lieu of sending Christmas cards x

Donation by Susan Hollington on 23/12/14

£10.00

+ £2.50 Gift Aid

For Christmas cards xxx

Donation by Louisa on 21/12/14

£30.00

+ £7.50 Gift Aid

Donation by Anonymous on 21/12/14

Donation summary

  • * Online donations£18,350.33
  • Offline donations£9,113.51
  • Text donations£30.00
  • Total raised£27,493.84
  • Gift Aid£4,069.15

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