A MEMBER of Unity Masonic Lodge 1332 (Crediton) has issued an appeal for support for a charity which is helping his partner’s daughter.

Alex Barton, of Thorverton, explained: “In September, my partner, Katherine Smith will be taking on the ‘South Coast Ultra Challenge’ as part of the Reverse Rett Team, walking 100km over two days in honour of our brave daughter Nancy (11) who suffers with Rett Syndrome.

“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: the ability to speak, walk, eat and breathe easily.  Nancy was diagnosed aged two, having never talked, walked, or met any of the developmental 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.  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 we are raising money to help find a cure for our brave beautiful daughter and all the children and adults suffering with Rett Syndrome across the world.

“Please support us if you can, thank you.”

The charity is a patient advocacy and research organisation focused on accelerating treatments and a cure for Rett Syndrome to everyone affected.

For more information please visit: https://www.reverserett.org.uk .

If you would like to make a donation, please visit: https://www.justgiving.com/page/ultrahike4nancy .