Rhys is 12 years old and lives in Shropshire with his mum Daisy, sisters Molly and Sapphire, and little brother Theo. He has a series of conditions including imperforate anus, chronic kidney disease and Beals syndrome.
Rhys and his family are stars of our video with professional chef Greg Wallace, part of our partnership with McCain.
Since birth, Rhys has had 38 operations and has been diagnosed with chronic kidney disease which the doctors say could limit his life to 25 years. He has also been diagnosed with Beals syndrome, a connective tissue disorder, and has problems with his gut.”
“Rhys inspires me, he never moans, no matter how tough the situation, he just smiles and gets on with it. He makes us all laugh, and should totally be a comedian! Everyone who meets Rhys says that he’s the most positive child.”
“Rhys hasn’t grown in three years so he’s on growth hormones. He has limited mobility and as a result he has to use an electric wheelchair. Rhys requires a stoma bag, which is quite a big thing for anybody, but Rhys doesn’t try to hide his disability because he knows that it’s a part of who he is.
“Rhys is totally unique. He’s such a diverse child and recently come out as gay. He’s make-up mad and will come and show me his ‘Liverpool make-up look’, and he’ll be bright orange! I want him to be independent with his choices, and have his own life and character. I want him to know that I fully support him.”
Rising cost of living
“I’m a single mum. I have to have the heating on because of Rhys’ feeding pump which requires electricity so I’ve been worried about my energy usage. Then putting food on top of that is even more expensive. I’ve had to turn the heating off and buy a little electric heater because we were going through gas like there was no end.
“Benefits are great but they don’t account for the rise in living, that’s why I work also. Caring for Rhys is a full-time job in itself, and the money I get for Rhys is a pittance. I’ve gone back to work and taken on extra hours so that I can get by.”
How Family Fund helped
Daisy has applied to Family Fund for support on several occasions. “The first time was for removal costs when we found a house more suitable for Rhys’ needs.
“In following years it’s been about holidays and creating memories together as a family. We have been to Butlins in Skegness twice and they are great because the cost of the theme park is included and Rhys loves rides. We also went to Mablethorpe with Haven, that was lovely because we were close to the beach.
“During the pandemic Rhys had been in hospital so much and with lockdown we hadn’t been able to go out anywhere. He really needed some new clothing and was worried about going out for that first time in his old clothes. Having the clothing grant just to spend on himself took his anxiety away.
“Recently Family Fund provided us with a gaming computer that I’d never be able to afford and Rhys loves playing on that. This year we have received another Butlins holiday and can’t wait to get it booked.”
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