Peter Hollington

Pete & Jamie's Movember

Fundraising for Reverse Rett
£240
raised of £200 target
by 14 supporters
Donations cannot currently be made to this page
Reverse Rett

Verified by JustGiving

RCN 1136809
We 're working to bring treatments for Rett Syndrome home

Story



A friend has recently had the devastating diagnosis of Rett Syndrome for her niece Lily. Please take the time to read about Lily and donate to enable more research into this awful condition.

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 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.  Lily's family and friends have already managed to raise over £29,000 in a very short time and we would like to add to this.

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

https://vimeo.com/84677189

Thank you

 


About the charity

Reverse Rett

Verified by JustGiving

RCN 1136809
Reverse Rett is a patient advocacy and research organisation focused on delivering treatment for Rett Syndrome to all affected. Read more here: reverserett.org.uk For Rett Registry UK: https://www.rettregistry.uk/

Donation summary

Total raised
£240.00
+ £55.00 Gift Aid
Online donations
£240.00
Offline donations
£0.00

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