The 27th Family Weekend was nearly upon us. After months of planning, liaising and organising (thank you Julie!) the Rett UK team was ready and the office looked rather empty as everything was in the van and zooming up the M1 to The Hilton, Northampton.
Julie, Steph, Debbie, Iram and Sarah arrived on Friday morning, resplendent in green Rett UK t-shirts, to unpack and set up Welcome Packs, merchandise (still available via the office) and information sheets. I took a detour to Luton Airport to collect a family from Rett Syndrome Ireland and arrived just in time for lunch! Over the course of the afternoon the wonderful Care Team arrived and transformed some of the hotel’s rooms into a rainbow of fireworks.
There’s always a slight lull just before families arrive. This is a chance for the team to catch their breath. Despite this being a long work weekend, I can assure you that we really look forward to spending time with you all. This year saw an incredible 229 people join us.
Old friends welcome new – no one is a stranger. There was much learning, socialising, dancing, eating, laughing, crying. I won’t give you a run through of every single session but over the course of the weekend we covered subjects such as scoliosis, facial sensitivity, research, epilepsy, middle-age, person-centred planning and CDKL5. We were extremely honoured to host the launch of CDKL5 UK and provide UK families affected by this diagnosis with their first opportunity to get together as a group.
The music and chatting carried on to the early hours of the morning. In fact, I think the Rett UK staff were amongst the last to go to bed each night, obviously taking their hosting responsibilities very seriously!
In January Rett UK will undertake a review of family support events – a ‘who, what, where, how and why’ type analysis. We need to ensure we are providing you, our members and supporters, with the events you want. Please do let us know your thoughts, and keep an eye out for information about our Regional Day in March next year.
Thank you for all the support you give to Rett UK. We are a small charity, doing a marvellous job, supporting anyone affected by Rett syndrome, not just nationally but throughout the world. I shall continue to support Rett UK and I urge you to do the same. We are unable to put a timescale on a cure and in the meantime other families will receive the devastating news that their child has Rett syndrome. We can’t support them without you.
This was my fourth and last Family Weekend, as I am leaving Rett UK in January. As I said in my ‘goodbye’ at the weekend (just before I cried and couldn’t speak any more) you are all an inspiration to me. Your endurance and compassion for others is limitless. Your children are amazing human beings and their smiles never fail to bring me warmth. Thank you, Melanie x