Katherine Smith

Katherine's fundraiser for Reverse Rett

Fundraising for Reverse Rett
£3,200
raised of £3,000 target
Event: South Coast Ultra Challenge 2024, on 7 September 2024
Reverse Rett

Verified by JustGiving

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

Story

Thanks for taking the time to visit my JustGiving page.

In September, I will be taking on the South Coast UltraChallenge as part of the Reverse Rett Team, walking 100km over 2 days in honour of my brave daughter Nancy, 11, who suffers with Rett Syndrome.

A bit about Nancy and Rett…

Rett syndrome is a rare genetic neurological and developmental disorder that affects the way the brain develops, which primarily affects females.

Most babies with Rett syndrome seem to develop as expected for the first six months of life. These babies then lose skills they previously had — such as the ability to crawl, walk, communicate or use their hands.

This then leads to severe impairments, affecting nearly every aspect of life: ability to speak, walk, eat and breathe easily. Nancy was diagnosed aged 2, having never talked, walked, or met any of the milestones her peers were achieving.

Research has shown that people with Rett Syndrome do not have brain damage. They know and understand much more than their bodies allow them to show – but they are locked in, trapped by a body that cannot obey signals from their brain.

We know that they understand far more than they can communicate to us, as evidenced by their bright and attentive eyes, and their beautiful smiles.

To think that we one day might hear our Nancy’s voice, watch her walk independently, be free of epileptic seizures, or use her hands purposefully is unimaginable, but for the first time ever, there is hope on the horizon…

Thanks to the dedicated selfless work of the charity Reverse Rett, clinical trials to find a cure are beginning in the UK this year. This is why I am raising money to help find a cure for my brave beautiful daughter and all the children and adults suffering with Rett Syndrome across the world.

Please support us if you can, thank you.

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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
£3,200.00
+ £756.25 Gift Aid
Online donations
£3,200.00
Offline donations
£0.00

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