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 8

£60.20 donated from the book company, thank you xxx

13/03/16 08:50

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

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 almost £3 million in just five years.

Raising money for

Run by Reverse Rett

Charity Registration No. 1136809

Donations 518

Lily such a brave beautiful clever little girl keep strong...with all our love Kerry your amazing mum keep it up keep strong 😘😘

Donation by Anonymous on 10/04/16

£120.00

+ £30.00 Gift Aid

Good luck lily 😘😘😘

Donation by Rebecca Stehr on 10/04/16

£5.00

+ £1.25 Gift Aid

Such a beautiful brave girl xx

Donation by Dalenna on 10/04/16

£4.30

Donation by Anonymous on 09/04/16

£20.00

+ £5.00 Gift Aid

For a beautiful girl from St Alban's Church, Dartford. Money raised from our Christmas Craft Fair. xx

Donation by Debbie Westerby on 15/01/16

£200.00

+ £50.00 Gift Aid

Merry Christmas. have a wonderful Christmas and good luck reaching your target. Xx

Donation by Becky Jull. on 17/12/15

£20.00

+ £5.00 Gift Aid

Merry Christmas and a Happy New Year xxx

Donation by Gemma Rafferty on 16/12/15

£25.00

+ £6.25 Gift Aid

Just a small contribution to a most deserving cause. Merry Christmas from Ginni and Michael Fryer x

Donation by Anonymous on 09/12/15

£20.00

+ £5.00 Gift Aid

Love Grandma & Grandad xxx

Donation by Anonymous on 06/12/15

£250.00

+ £62.50 Gift Aid

For my Lils <3 xxx

Donation by Auntie Tasha on 06/12/15

With love

Donation by Great-Grandma on 28/11/15

£10.00

+ £2.50 Gift Aid

Kerry your story touched my heart. Hope this helps a little towards your beautiful little Princess. When I hit Diamond there will be more. Love Gill x

Donation by Gillian Pollard on 07/09/15

£10.00

+ £2.50 Gift Aid

Donation by Tom & Ann NZ on 05/09/15

£50.00

+ £12.50 Gift Aid

Happy Birthday to Lily for tomorrow. Hope she has a lovely day. Lots of love xx

Donation by Carlie on 03/09/15

£50.00

+ £12.50 Gift Aid

Carly Rose - Kerry your an absolute amazing woman

Donation by Carly Rose on 03/09/15

£12.00

+ £3.00 Gift Aid

what an amazing cause xxx

Donation by Anonymous on 03/09/15

£10.00

+ £2.50 Gift Aid

Sadly we were unable to attend the fete yesterday but want to wish you all every success with your fund raising for Team Lily!

Donation by Jane & Greg Farrett - Farningham Mill on 16/08/15

£50.00

Sorry I can't be at fete today - hope it's a great success x

Donation by Sue Hollington on 15/08/15

£10.00

+ £2.50 Gift Aid

My mnother recently passed away aged 101 and instead of flowers she would have preferred some form of donation to a childrens charity to assist them in some small way In memory of Louise Garrad

Donation by Ben Garrad on 13/07/15

£250.00

+ £62.50 Gift Aid

Money from Jan Odell for selling plants

Donation by Tash on 05/07/15

£5.00

+ £1.25 Gift Aid

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

Donation summary

  • * Online donations£19,571.63
  • Offline donations£10,593.06
  • Text donations£30.00
  • Total raised£30,194.69
  • Gift Aid£4,360.90

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