New charity raises awareness of Rett Syndrome

New charity raises awareness of Rett Syndrome

New charity raises awareness of Rett Syndrome

There are 17 baby girls born every day with Rett Syndrome, and even though it is as common as Cystic Fibrosis, Rett’s is still relatively unknown.

There is now, however, a new charity that are taking a totally different approach to Rett Syndrome; CURE RETT aim to focus on the care and support that is given to the families of RETT SYNDROME sufferers, a genetic condition for which there is currently no cure.

Driven by the needs of the families to raise the awareness of Rett, there was an overwhelming gap in the support in that there was no focused base for those who were seeking to find advice and help from others in the same position. At the same time, they will be working towards finding a possible cure by fund raising and organising other initiatives.

RETT SYNDROME is globally one of the main causes of disability in females. 17 girls are born with RETT everyday, and although it’s as common as Cystic Fibrosis, RETT SYNDROME is relatively unknown.

Though genetic in origin, symptoms rarely appear before the age of 18 months. Early typical development is rapidly arrested and followed by loss of acquired skills. Most children with RETT SYNDROME lose the ability to walk, use their hands purposefully, speak and perform independent actions. Many develop seizures, cardiac problems and crippling scoliosis. All of which leaves them needing 24-hour care. In worst cases this can result in tragic and untimely death.

CURE RETT grew from the dream of one couple when they discovered their daughter Carys had RETT SYNDROME.

The charity, originally called ‘Cure for Carys’ was created by James and Bonny Westgate earlier this year, but the rapidly expanding network of families who are affected by RETT has meant that a new, dynamic, forward-thinking charity was needed.

James Westgate remains committed to this new approach and is the Executive Director of the charity, he says:

‘We are ever hopeful that a cure will be found for Carys and the other little girls we’ve met. They have touched our hearts with their courage and happiness despite the difficulties they face every day. We need to get the message across that families are not on their own and there is help and support out there for those that really need it.’

For all information on RETT SYNDROME and how you could help visit our website, which will be launched on September 27, 2012.

Also you can stay up to date with all the latest developments on our Facebook page or follow us on Twitter.

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