Boy in the bubble can play in the park again
Jun 12 2008 by Abbie Wightwick, South Wales Echo
He couldn’t even have a hug from his mum for fear of infection, but after a lifesaving bone marrow transplant at Newcastle General Hospital little Rhys Harris is on the mend. Abbie Wightwick finds the family is now making plans to return to Wales…
RHYS Harris spent two months in an airtight bubble in an attempt to save his life but now he’s back playing rugby and tucking into his favourite meal of roast chicken after fighting a rare genetic disease.
The seven-year-old from Newbridge, Caerphilly, who could not even have a hug from his mum for fear of infection, has been cared for by doctors in Newcastle since last October.
Dad Kevin, 44, mum Dawn, 39, and brother Morgan, five, all moved north to be with him for a lifesaving bone marrow transplant.
Now doctors at Newcastle General Hospital say Rhys is on the mend at last and the family plans to return to Wales in the next couple of months.
Consultant Dr Mario Abinum said he would not know whether Rhys had been cured until further tests in the autumn, although it was “looking very positive”.
“It’s great news,” Dr Abinum said.
“Rhys is great. He’s doing OK and putting on weight. We can’t say he’s cured because it’s only seven months since the transplant.
“We need to do more at 12 months. But so far everything is excellent.”
This time last year Rhys was dying from the genetic disease Nemo, which attacked his immune system leaving him unable to fight infection.
Doctors at the University Hospital of Wales in Cardiff got in touch with Professor Andrew Kent in Newcastle who advised a bone marrow transplant.
A desperate hunt against the clock then began for a match. But even when a match was found in the USA, Kevin and Dawn were unable to celebrate.
Kevin wanted to pull out on the day the transplant was scheduled, fearing the risks which could also kill his son.
“You should be elated but as a parent you then have to ask whether you will put your child through it all,” Kevin said. “We had to make the decision to sign a bit of paper that could have been Rhys’ death warrant.
“Until the day of the transplant I was still going to pull out. Do you let your child die with dignity or let him go through chemotherapy? Chemotherapy is a horrible thing and so is isolation.
“We had a terrible week and then Professor Kent just told me there was no option. He sat me down and changed my mind.
“He is the only person who could change my mind. He is a wonderful man.
“Now we are out the other end. We have a life with Rhys now that was not with us last year.
“We have a future now that we were told we would never have this time last year. We can plan ahead.
“I can get home and get a job and Rhys can go to school.”
In the meantime, Rhys, a pupil at Hollybush Primary in Cwmbran, is enjoying finding his feet in the world again, playing in the park and meeting other children.
During his two months in isolation, Rhys could not even be comforted with a cuddle from his mum because his immune system had been killed off by chemotherapy.
Before the bone marrow transplant pumped a new immune system into his body, any bug could have killed him.
His parents are still wary when people cough nearby, but they can take Rhys to kick his treasured rugby ball in the park again.
“He’s able to interact with other children now. But until the tests in October, which will be a year since the transplant, we will be on edge a bit,” Kevin said.
“We can’t really say the ‘c’ word for cure yet but it’s positive news and Rhys is home with us.
“Rhys plays rugby but is not able to go back to school yet. A tutor comes to the house twice a week. He’s a normal seven-year-old boy and he needs challenges. We try to keep contact with his friends in Wales. He misses them.
“I try to go home every couple of months. It’s very odd.
“We’ve made a life for ourselves here now. Morgan goes to school here and the other parents have been so supportive.
“We’re looking forward to going back; it will also be hard. When you go through an experience like we have, the place you’re in becomes very poignant. It’s beautiful up here and the people are lovely.”
Rhys was left profoundly deaf by meningitis when he was small, and Kevin was training to be an audiologist and studying for a degree when he fell ill with Nemo.
Now Kevin wants to take his life off hold.
He has been studying sign language and Spanish and wants to work for a charity.
“You have to do something else. I like nothing more than going for a run or out on my bike. I had to do something with my time when I stopped working.
“Rhys needed us to help pull through. The whole of Wales has helped pull him through too. The Cardiff Blues, Ospreys, the Dragons, the WRU and the whole Welsh rugby team spoiled him and made a fuss of him.
“They helped to make a little child happy and I think that helped him to keep strong.
“If it was not for people being like that I honestly don’t think he would be here today. A smile is as good as medicine.”
Kevin now wants to increase awareness about the bone marrow register and get more people to sign up as potential donors.
“At any one time 7,500 people in the UK need a bone marrow transplant. It’s a transfusion not a transplant. We would get thousands more people immediately if they called it a transfusion. People get put off by the word transplant.
“The whole of Pontypridd Rugby Club are all on the register now.
“If someone went past a river and saw a child in there 99% would go in and help.”
That is one reason why Kevin and Dawn have always kept good relations with the media. They hope the exposure may highlight the need for more donors.
Last week they were besieged by the world’s media after someone wrongly reported Rhys had been “cured”.
Dawn and Kevin admitted it all got a bit much.
“Dawn and I are very private people but we made a conscious decision to talk to the media to help find a bone marrow donor that matched,” said Kevin.
“It’s not easy to talk about what we’ve been through, especially for my wife.
“But we decided we had to do it. It was part of our mission to find a donor.”
Dawn, like any mother, now wants what seemed an impossible dream a year ago.
“Hopefully, Rhys will have a long and happy life,” she said.
