Kabuki UK is run by five voluntary trustees who collectively identified the need for a support group for families affected by Kabuki Syndrome. In 2011 Tommy Allen started the ball rolling by suggesting that we formalise our thoughts into actions and form the charity so that we could really begin to make a difference. The struggles that we have all faced in getting the right care and treatment for our children, as well as overcoming the lack of knowledge and awareness of Kabuki in the medical world, make us all determined to help current and future Kabuki families as much as we can.
Beth Allen lives in Shropshire with her daughter Rosie and Charlie, who was diagnosed with Kabuki Syndrome in September 2011. Lisa Johnston lives in Bournemouth with her 5 children. Kitty was born in January 2009. She was diagnosed with Kabuki Syndrome at 13 months. This was a very isolating time for Lisa and her husband Jason with no support group to turn to. Sally and Paul Trewartha live in Essex with their son Harry who has Kabuki Syndrome and his little brother Toby who does not. Sally feels passionately that with the right help children with Kabuki Syndrome can go on achieve great things. Emma Fisher is our treasurer and accountant and is Kitty's Aunt.
The first Family Day to be organised by Kabuki UK was held at Lisa and Jason's house in Bournemouth in 2011. It was a great day with lots of BBQ food and lots of new friends made. You can see some photos of the day here. This was also the first meeting of the Trustees where we agreed on the charity’s aims.
Our first goal was to gain formal registered charity status. In order to do this we had to raise the required amount of money and go through all of the legal registration necessary. We managed to do this in six months which was a great achievement.
Since then we have held three more family days, with each year bringing more families who make new and lasting friendships. You can see pictures of the family days here.
In October 2014 we launched our grants programme. Helping families in their day-to-day lives was one of our main aims when starting the charity, as we know only too well the difference that specialist equipment can make, as well as the struggle it can sometimes be to get the items our children need to develop and progress. We hope that our grants programme will continue to grow and expand through the generosity and kindness of our fundraisers, allowing us to improve and enrich as many lives as possible.
Going forward, we hope to build on our network of area representatives so that when families across the country receive their Kabuki diagnosis there is someone there for them to contact in their local area.