Rhys is 12 years old and lives in Oswestry with his mum, Daisy, sisters, Molly, 15 and Sapphire, 9, and little brother Theo who is four. Rhys has a series of conditions including imperforate anus, chronic kidney disease and Beals syndrome.

Rhys and his family are stars of our feature video with professional chef Greg Wallace. Click here to watch the video!

 

Rhys’ condition and how it affects him

Daisy explains, “When I was pregnant the doctors thought that Rhys had Edward’s Syndrome, where sadly most babies die shortly or after being born, but I didn’t want an amniocentesis. The doctors could see both of Rhys’ kidneys but one looked like it had cysts on it. Then during gestation one of the kidneys disappeared.”

“Rhys was born at 36 weeks with imperforate anus and only one kidney. Unfortunately, the maternity notes about his kidney didn’t follow us into hospital so the doctors were unaware until he went into kidney failure. 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. Additionally, Rhys has been diagnosed with Beals syndrome, a connective tissue disorder, and has problems with his gut.”

“Doctors suggest Rhys needs to consume 3500 calories a day in a combination of oral food and through his Mic-Key button, a tube designed for the delivery of fluids and food directly to the stomach via a stoma. We started off using blended food and powder in the Mic-Key button but Rhys’ stomach couldn’t handle it. He’s now on pre-digested milk which is already made with all the nutrients that he needs for the day, but only provides him with 2000 calories which isn’t enough so oral food still plays a big part in his weight. When Rhys got covid he didn’t eat anything orally and as a result he lost 2kg, showing his oral food intake is really important.”

“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, and that 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. With Rhys you never know how quickly he’s going to go downhill; he could change in minutes. There are no warnings, it’s scary how things come on so quickly. With other kids they might have a temperature or feel sick, but with Rhys it just comes on within minutes and we have to go to hospital. If you ask Rhys what his favourite thing is he says lifts, because when he goes in them, he knows he’s going home from the hospital.”

Daisy says, “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. He really shouldn’t be here with what he’s been through, but he fights. And that’s something that I see in children with disabilities, they really fight, and yet they’re so happy. That’s their norm.”

“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! He’s asked for a wig for Christmas too. 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.”

 

 

Daily life and challenges for the family

“I was 22 years old when I had Rhys, and because I was so young, I probably didn’t ask for help. I got severe post-natal depression and sleep deprivation. I was living on two hours sleep because Rhys was being sick in the night and wouldn’t wake up. I didn’t know what help was available and I felt lost. I should’ve had counselling and I should’ve had someone experienced around me for advice. It made me grow up quick, however having Rhys has taught me a lot about life. It’s taught me that tomorrow isn’t promised for anyone, and that you have to cherish the time you have.”

“Molly, Rhys’ older sister, really struggled when she was younger because my time was taken away from her and she had to live with my parents for the first few years. Sapphire and Theo have lived with it since birth so it’s normal for them. Thankfully, Molly has acclimatised now. Rhys spends so much time in and out of hospital that all the children have adapted to going to stay with family and friends at short notice.”

With cost of living raising Daisy has been worried about the effect on the family. “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. I’ve also been meal planning, which doesn’t always account for Rhys’ needs because if I’m planning something and he changes what he wants then I’ve got to go out and buy that on top.”

“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 know I’m lucky to have it but I find that if I can work as well then it bumps our money up. I’ve gone back to work and taken on extra hours so that I can get by, and make sure that the kids get what they need. But I am also aware that as a family we need to make memories with Rhys, time is something you can never get back with your child.

 

Mealtimes

Daisy explains that mealtimes can be difficult to manage. “I always have to make two different meals because Rhys won’t eat what everyone else eats. We have to go to the supermarket to find specific food that he’ll eat. Rhys goes through phases where he only eats certain foods. He has gone through food phases of just crisps and just chips. Rhys will eat these things for about three months straight and then go off food altogether. I then have to make different meals to try and get Rhys to taste and start eating again.”

Daisy adds, “I’ve got to plan my day around Rhys and his feeding, not in a bad way, I’ve just got to think about it. At school Rhys is gravity fed and if he eats something before, then the milk can take up to 40 minutes to go in, which will then affect his school day, so we have to balance his meals. Rhys goes on his pump at night time and we have to plan his meals so that he has a few hours to empty his stomach again before we put his milk on. If he eats just before he goes to bed, he can’t actually be sick because he’s had a fundoplication which means he’s had stomach surgery to close off the top, but it’s like an overload so he constantly wretches. Therefore, I usually try to get dinner ready for 5pm so Rhys has three hours before he goes on his pump.”

  

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.”

“Then 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. Now this year we have received another Butlins holiday and can’t wait to get it booked.”