Date published: 25 April 2018 by Anna Jackson
Katie and her three sons, Jacob, Louis and Charlie, one of whom has an undiagnosed genetic condition and has started walking against the odds, are appealing for people to take part in the #GreatRainbowBake on 7 May.
The campaign invites families to celebrate spending precious time together and having fun by baking a rainbow-themed cake with family, friends or colleagues, and donating £5 to help families like Charlie’s get the support they need. Katie, Charlie’s mum, said:
“I would encourage people to take part in the Great Rainbow Bake and help families like ours because Rainbow Trust has been like a lifeline. Just having someone else to turn to, talk to and to help with all the little things makes a huge difference to my family.”
Little Charlie, who is partly tube fed and cannot speak, has undergone various invasive tests since he was born and is part of the 100,000 genomes project at Southampton Hospital, which means doctors are continually analysing his DNA to try and find out more about his condition.
Charlie is on oxygen at night and he has difficulties coordinating and controlling his movements. Yet, despite all this, he is doing well and is managing to hold up his head and recently started walking slowly.
“He has exceeded everybody’s expectations and gone from strength to strength and he has the most infectious smile,” Katie said. “There is no diagnosis, so no prognosis, so it is difficult to plan things. I still don’t know what the future holds for Charlie but this time last year I would not have said he would be walking.”
Family Support Workers Dawn and Amanda were a great help to the Phillips family after Katie returned home after a five-month stint in hospital with Charlie.
They helped at bath and meal times and by taking them to hospital appointments. Perhaps most importantly, they helped Jacob come to terms with his younger brother’s illness, helping him feel less isolated by taking him out on day trips with other children.
“Dawn and Amanda help Jacob feel special again,” Katie said
“Jacob knows they are there for him and that makes a huge difference to me. When I was rushing around doing things he told me, “Mummy, you don’t listen to me anymore” and he made a valid point. Having Dawn means he has someone special who does listen to him.
With Charlie doing so well, Katie is keen to help raise awareness to thank Rainbow Trust for all the help her family has received.
“It is so important to raise awareness of Rainbow Trust because I wouldn’t have wanted to be without them. Having Dawn and Amanda made life a lot easier and made me a lot less anxious.
“They were there when I needed to talk or needed someone to listen to and they totally understood.”
Bake and Donate £5 on the 7 May and share your baking masterpieces or disasters with us using the hashtag #GreatRainbowBake.