A neurological condition Rett Syndrome often strikes previously healthy little girls leaving them with multiple disabilities and medical complexities.
Born on the 6th October 2008 Holly was a beautiful healthy girl. She developed normally until about 12 months, then very slowly started losing skills. Holly was diagnosed with Rett Syndrome at 2 1/2 years old.
Holly’s mum Emma Boyes is our national sales manager and daughter of SAPC directors Peter and Amanda Moody.
From that day of diagnosis our world fell apart. All our dreams and hopes for our beautiful baby girl had gone and we were going having to set new ones, but what were they? We had no idea.
Reverse Rett was founded by parents who joined together to raise money to fund research that will have a practical and positive effect on their children’s lives, and speed the development of treatments and cures.
In 2011 Emma and her husband Adrian organised the first HollyFest.
When we heard the words ‘Holly has Rett Syndrome she will never be able to walk or talk again’ there can’t be any harder words to hear surely can there? HollyFest gave us a chance to start taking on board the news and doing something positive with it. When 200 tickets to the first HollyFest sold out we thought, this could get bigger…
The annual live music event takes place in the family’s home town of Cheltenham and hosts one of the biggest and best raffles we’ve ever known.
Whilst there is currently no treatment for Rett, there is hope.