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  • 1

    Hi, my name is Kayleigh and this is my family

    My husband Ben and I have three beautiful children; Chelsea is eight, Leo is two and a half and Elliott is 16 months old.

    This Christmas, with help from Rainbow Trust Children's Charity, I am planning a wonderful Christmas for all of us, despite the difficulty of caring for two children with a serious illness.

    Click each numbered bauble to read Kayleigh's story.

  • 2

    When Leo was born, he spent four weeks in intensive care

    He was quite floppy and had to be tube fed. As he grew, he couldn't crawl or roll over, and he'd sleep for up to 19 hours a day. He was 14 months old before we had a diagnosis and Elliott was born just two months later.

    Leo and Elliott both suffer from Glycogen Storage Disease, a genetic and metabolic disorder. They need to eat a controlled diet every two hours – day and night.

    It's exhausting for all of us.

  • 3

    At first we didn't realise how difficult each day was going to be

    We initially felt we could manage to care for the boys on our own, but a year on, Ben and I felt downtrodden and worn out. I was absolutely exhausted.

    Ben doesn't drive, so I was taking the boys to every hospital appointment plus taking Chelsea to school and back as well as running all the other errands.

    Ben had to leave his job to help care for the children and so we've also struggled financially.

  • 4

    By that time, we were close to breaking point

    We heard about Rainbow Trust from our Community Nurse. We heard they came to your home and helped the whole family.

    Soon after Leo's diagnosis, our Rainbow Trust Family Support Worker, Claire, started supporting us at home.

    Claire began to visit us regularly, spending time with the children and helping Ben and I when we're feeling under pressure at home.

  • 5

    Claire has been trained to tube feed the boys

    I trust Claire to take care of the boys. If she has any questions, I know she'll call. This means she can take the children for a whole day out, so that Ben and I can make time to do other important things like pay bills or do the food shopping.

    It gives us time together too, which we desperately need.

  • 6

    It's not just about our sick little boys, it's about the whole family

    I know that the hospital will help Leo and Elliott but each one of us needs a bit of help to deal with day to day life.

    Rainbow Trust came into our lives just when we needed them most. With Claire's help, we are better able to manage, she's taken a huge weight off us.

  • 7

    This Christmas will be the first that Leo and Elliott will be old enough to really enjoy

    I want to make sure it's perfect. Because we need to feed the boys exactly every two hours, Ben will have to be up at 3am to put the turkey in so that it's ready for lunchtime. You don't get a day off from this, you just have to get on with it. Having Claire around helps. She's really calm and you need that to calm you down too!

  • 8

    My Christmas wish

    Having someone like Claire at such a difficult time has meant so much to all of us.

    My Christmas wish is that all families struggling to care for their seriously ill child could have a Rainbow Trust Family Support Worker. You can help make this happen by supporting their fantastic work.

    Please give whatever you feel you can so that more families like mine can look forward to a wonderful Christmas together.

    I wish you all a magical Christmas,
    Kayleigh (Chelsea, Leo and Elliott's mum)

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