Thanks for taking the time to visit our JustGiving page.

Just before Christmas, and shortly after her second birthday, Louisa’s god-daughter Lily was diagnosed with Rett Syndrome. A tiny mutation to a single gene that has condemned her to a life of profound disability and total dependence.

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 her family were not being given any answers. 

 

Sadly a diagnosis of Rett Syndrome means that Lily is locked inside her body, unable to communicate and 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 and scientists predict that it will be the first curable neurological disorder. 

 

The only thing holding back a cure is money and researchers are wholly reliant on private donations from people like us.  Since Christmas, Lily’s family have been tirelessly fundraising to help find a cure for their daughter and seeing our friends’ determination during such a difficult time has truly inspired us so we are running a Half Marathon to raise money for Reverse Rett – a charity working to accelerate treatments and cures for Rett Syndrome and related MECP2 Disorders.

 

Please help us to help Lily and her family.

 

For more information about Lily and her Journey with Rett Syndrome please watch this video that her parents put together https://vimeo.com/84677189

 

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. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

Thank you for your support.

Louisa & Anthony xx