Rhys James is like many nine-year-old boys - he loves football, is a doting older brother, and attends school with his friends.
But, unlike his classmates, Rhys has to have daily physiotherapy, nebulisers and tablets, and has spent more time in hospital than many children his age.
Rhys lives with cystic fibrosis, an inherited condition that causes mucus to build up in the lungs and digestive system. Now, his dad, Carl James, is looking to raise money to fund research to help find a cure for the condition.
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Rhys was diagnosed with cystic fibrosis when he was just three weeks old. It affects an estimated one in every 2,500 babies born in the UK, with around 1,000 new cases being diagnosed each year.
Carl has organised a Rugby Legends event set to take place on May 12 this year with the likes of Jonathan Davies and Nigel Owen appearing as special guests, in order to raise money to fund more research into finding a cure.
Despite daily nebulisers, medication and frequent hospital visits, Carl says Rhys continues to live his life as normal as possible with his dad, mum Sarah, and three-year-old sister Isobel in Caerleon.
“He has to get up a little bit earlier than other children to fit everything in before he goes to school,” Carl said.
Every morning before school, Rhys has 20 to 30 minutes of physiotherapy, five to 10 minutes of nebulisers, and will take around eight or nine tablets.
“Then he has to repeat the whole process when he gets home,” Carl said.
“That’s seven days a week.”
Treatments are available to help reduce the problems caused by cystic fibrosis and make it easier to live with, but life expectancy is sadly shortened.
Due to the irreparable damage it can do to the lungs, only around half of the people born with cystic fibrosis today will live to the age of 47.
Carl, 43, said that receiving Rhys’s diagnosis was “like being hit by a bus”.
“We didn’t know what the words cystic fibrosis meant. You’re sort of numb, because you don’t know what he’s been diagnosed with and when you start to look into it and see that there’s no cure, and the life expectancy, it scares the hell out of you,” Carl said.
“But now there’s more and more medication and research being done, more treatments available.
“Rhys is doing very well. He’s nine years old and about to start some new treatments and medication, which is only going to help his ability to fight this condition.”
Two years ago, Rhys and his family faced the prospect of having to move out of Wales or pay £24,000 to access a year's supply of a potentially life-changing drug from Argentina.
However, the Welsh Government then agreed to fund the drug, Orkambi, in Wales, with Rhys being able to access it from early 2020.
Since being given access to Orkambi, Carl says Rhys hasn't required any overnight stays in hospital and has more energy.
"He's got much more of an appetite and his sleeping patterns have improved greatly as well," he said.
A few months after Rhys was able to access Orkambi, Wales also gained access to a drug called Kaftrio.
"Rhys will be starting that in the coming months and that's pretty much a game changer for cystic fibrosis patients," Carl said.
Despite the treatments that Rhys has to have every day, this hasn't stopped him engaging in his main passion - football. Rhys plays in goals for Caerleon Under Nines, where Carl is a coach.
“His idol is Ronaldo - he’d give anything to meet Ronaldo,” Carl said.
“We do everything we can with Rhys outside of school to keep him as active as possible, because with CF you have to keep the lungs clear of mucus.
“The fitter they are, the more exercise they do, the less chance of them picking up infection.
“Sport is top of our list. All day every day, it’s swimming, golf, football, running - whatever we can get Rhys to do helps protect his lungs by keeping them clear.”
Sport is at the heart of Carl’s fundraiser, with Welsh former international rugby union referee Nigel Owens and former rugby player Jonathan Davies appearing as special guests at the event.
“During lockdown and when we were shielding I came up with this idea that it would be good to get everyone together, get some good auction prizes and get some high profile guests and speakers and try to raise as much money as we can into research for a cure for cystic fibrosis,” Carl said.
Carl is hoping to raise £10,000 through the event for further research into a cure for cystic fibrosis, which currently has no cure.
Tickets for the event cost £65 per person, will all money being donated to the Cystic Fibrosis Trust.
“It’s not just for my son Rhys,” Carl added.
“There’s over 10,000 people with this illness in the UK. While Rhys is the focal point of the evening and will be on stage with me, it’s for everyone who suffers with CF in the UK.”
“I thought let’s go for it - let’s get two high-profile names and see where we go. Tickets are absolutely flying out and we’re doing really well.”
Along with special guests, the event will feature a male voice choir singing Welsh rugby songs and Welsh hymns.
Broadcaster Sean Holley will be compering the event, which also features a two-course meal and a raffle with prizes such as signed Welsh rugby shirts, Lionel Messi signed shirts and signed items from the likes of Gareth Bale and Ryan Giggs. A New Zealand All Blacks signed shirt from their Rugby World Cup win in 2011 is also up for grabs.
“We’ve had so much donated, it’s fantastic,” Carl said.
Lockdown proved to be a difficult period, with Rhys and his family having to shield for nearly 16 weeks during lockdown.
“As a family, Covid was absolutely terrifying. We were told we had to shield and we didn’t know how long it was going to be,” Carl said.
“We didn’t even really go out to buy a pint of milk or a loaf of bread for a couple of months.
“We relied heavily on food deliveries from supermarkets and friends and family dropping off supplies to us.
“It was terrifying, really, because we had someone who needs to be out and active, and all he could do was go in the garden, so we had to improvise.”
Rhys and his family played football in their garden to keep active as well as playing different games.
After coming up with the idea in lockdown and now selling tickets for the event, Carl says the fundraiser is important for him and his family.
“This event means everything to us. If I can make this a success, I would probably look to try and do something on an annual basis,” Carl said.
“There’s so many people with cystic fibrosis. We have to find a cure and a way to stop this. The more money that can be raised, the more chances are of finding a cure through research and treatment.
“This event has to be a success - I cannot fail because it’s my son, it’s my family. It’s not just for Rhys, it’s for the rest of those with CF in the UK as well.”
For tickets to the event or to donate sporting memorabilia for the auction email tickets.rugbylegends@gmail.com
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