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