Today Ben Hick enjoys life to the fullest and beams good health but as a teenager he spent months on end isolated and battling a rare, life-threatening condition.
He is immensely grateful to the donor found through the Friends of Anthony Nolan register, who gave bone marrow twice, so that he might enjoy what he calls a ‘second lease of life’.
‘I was quite lucky, they found me a donor really quickly,’ he said. ‘I actually had two potential donors. You look to get ten components matched, I had two donors with 9/10 matches.’
He was diagnosed when he was two years old with chronic granulomatous disease, or CGD, which affects an estimated one in four million people.
It is a hereditary condition that severely weakens the immune system, making infections a serious threat. While he enjoyed a largely illness-free childhood, when he turned 15 he began a battle for life, spending the bulk of the next four years in hospital, repeatedly struck down by fungal pneumonia.
‘Each one of those times, it’s like an eight-month spell of going in and out of hospital,’ he said. ‘The quality of life was not very good. I would lose chunks of my days just sitting in hospital, hooked up to an IV machine, just getting fed really strong medication.
‘I don’t know how many more times I could have got fungal pneumonia and survived, realistically. It takes such a toll on your body. The medication is so strong, they have to treat it really aggressively and it can have a really bad impact on your kidneys and the pneumonia was in my lungs.’
It was also tough to lose out on much of his teenage years, but the former Victoria College student still managed to complete his schooling getting 12 GCSEs and three A-levels.
Socially, it was lonely and isolating although, he says, his friends and family always came to spend time with him at the hospital.
‘Given the fact that I had been so unwell, it was a pretty easy decision,’ he said of having the transplant, still a relatively unknown procedure at the time the donor was found. ‘It was a massive risk. There was always a chance my body would reject it.’
Before he could receive the transplant, his immune system had to be knocked completely out with chemotherapy.
He spent four months in hospital in London. ‘It got a lot worse before it got better,’ Mr Hick said. ‘Your body literally can’t fight any thing off. I had to be in complete isolation for about 2½ months.’
‘At times it was terrifying but, about a month after the transplants, things started to improve. I was asking myself, “Is this what feeling well feels like?”,’ he said.
‘I just had so much more energy. It was weird because I felt what I thought was well before having the transplant. But, it turns out, because of the CGD, I was not well at all.’
In fact, he was bursting with energy and as soon as he could leave the hospital, he began walking all over London.
He was not allowed to go into indoor spaces for fear of infection but, on the streets, he stretched his legs and freedom.
‘I was walking for miles every day,’ he said. ‘I had this surge of energy. I think they were quite surprised at how active I was.’
He was 19 years old and could experience the full joy of living for the first time. He came home to Jersey. He got back into football. To come back and be well, to be able go out with my mates, to go out and play football, go on holiday with my pals, it was amazing,’ he said. ‘It was like a second life. It’s not about leaving that whole life behind me, as such, because that whole being ill sort of made me who I am. I have learned so much from that experience and matured a lot through that experience, but I have sort of been catching up on those years I lost.’
He loves his work – as a fixed-income trader with Bridport – and is ‘enjoying being young and living in a great island like this’.
‘I am sort of normal now,’ Mr Hick said. ‘It’s a strange thing to say. To other people it’s so inconspicuous but to me it’s like, I am well, I can go out and play football. I do a bit of running, go out with mates.’
As Jersey Friends of Anthony Nolan embarks on its 25th year, he and his football friends at St Clement’s FC are keen to support the charity, which is striving to register as many potential donors as possible.
A registration drive is being launched throughout the football clubs.
‘We had a fantastic response from the St Clement’s lads,’ Mr Hick said. ‘It makes me so happy to see them get right behind it. The football community is such a tight one, everybody knows everyone. I really do think it will get a great response. Obviously it is the ideal group of people because Anthony Nolan are looking for male donors.
‘They are looking for people between the ages of 18 and 30. It’s the prime demographic and the benefit is you always have a new set of 18-year-olds coming in to senior football. It’s like a conveyor belt of potential donors.’
Mr Hick hopes other sports were also be inspired to get involved. He knows it is not a small thing. Being a donor is not a small commitment but ‘you can literally save a life’.
He knows his donor was a German woman and is keen to thank her for the gift she gave him. ‘I would love to get in contact with them but you have to wait a certain period of time and then you can write to them,’ he said.
‘It’s a long process. I know how much better my life is now from the help of Anthony Nolan and the help of my donor.’
lAnyone interested in stem cell donation or the work of the Jersey Friends can contact them through Facebook or via email at: jerseyfriendsofan@gmail.com. People can also sign up online to join the register at (anthonynolan.org/joinjersey).
