Time is precious, our children cannot wait a whole year for the sparkle, glitter and magic of Christmas. They need it every day.
Christmas is a special time of year, the anticipation of the Christmas gifts, the tree decorated with baubles and lights, wrapping the presents and spending time with friends and family. We all spend so much time planning for the perfect day, and then it goes so quickly.
For seven year old Lucy Lloyd understanding the festive concept is difficult, she suffers with Dravet Syndrome, a rare form of epilepsy – where seizures can be deadly. She has the mental age of a two year old and struggles with her mobility, but she absolutely loves the magic of Christmas, the twinkly lights, sparkly tinsel and all that glitter.
You can deliver the magic throughout the whole year by making a regular monthly donation of £20
Lucy’s mum Kerry discovered Rainbows in 2014. Rainbows has been a godsend to us,” said Kerry. “When we discovered Rainbows, I was on the verge of cracking up and it helped to save my sanity. As well as it being brilliant for Lucy, it’s something I can look forward to because it is the one time I can truly relax. I completely trust everyone at Rainbows and know Lucy is receiving the greatest care.”
Your support is critical to ensuring that children like Lucy, children who suffer from so many different and complex conditions, can create magical memories with their families. Your regular donation will make sure every child and young person that relies on Rainbows will be cared for at the hospice and in their own homes.
“Rainbows is just brilliant and Lucy absolutely loves it there. Once she was given the freedom to paint one of the wet rooms, the mirror, the walls, everywhere. She absolutely loved it and that was just amazing. At Rainbows she really does get to enjoy the magic of Christmas every day, I would never be able to give her opportunities like that at home.”
It’s hard being the mum of a child like Lucy, Kerry must keep an eye on her temperature all of the time, if it gets too high, it can trigger a seizure, the same can happen if she gets over excited. Lucy also has ADHD, Autism and struggles to sleep at night. For single mum Kerry it means that she can be tending to her daughter every hour, day and night, as well as being a mum to her two sons, Kane (20) and Joshua (12) who is autistic.
Kerry Says “At nine-months-old Lucy started having unexplained and sometimes extreme seizures, most weeks she was taken to hospital in an ambulance, it was terrifying”. At three-years-old Lucy almost died from an uncontrollable seizure, all of her veins collapsed and her heart stopped. “Doctors had to drill in to the bone in her leg to get the medication in. She ended up in Intensive Care and it was just horrible. At three and a half, Lucy was diagnosed with Dravet Syndrome. It was a double edged sword. I was relieved to know what was wrong, but it was also so scary knowing the diagnosis.”
With a regular donation you can make sure mums like Kerry are supported when they need it.
Kerry added: “There is no way of knowing Lucy’s prognosis. There are some older children in the Dravet community, which is nice to see. But every once in a while, there is a spate of deaths in Lucy’s age group and that is terrifying. So for now, I just take every day as it comes and make the most of every minute with my amazing daughter.”
Kerry and Lucy are not alone, for all of the children and young people that come to Rainbows the future is unknown and every single moment is precious. Please help to bring the magic of Christmas to their short lives throughout the year by giving Rainbows a regular or one off donation.
Wishing you and your loved ones a peaceful Christmas.