Meet James Gray, Sales Operations Manager, Aerospace and Automotive lover, world-traveller
“In many ways I’ve lived the dream life: work hard, play hard” says James (42) who has developed his international business career in the Aerospace and Automotive sectors in the UK and Dubai. “Living in Dubai gave me the opportunity to see the world” he tells me, “I visited Japan, Sri Lanka, the Maldives to name a few, I also met my wife Catherine out there.”
James was born with FA but wasn’t diagnosed until he was around 15. “My older sister Shelly (who was about 18 or 19) burnt herself doing some encaustic artwork. She ended up going to hospital because the wound turned green. After lots of tests, her bloods revealed very low counts, and she was called out of work to go to hospital. Two or three weeks after that, she was diagnosed with FA.” James says.
“I was doing my GCSE’s at the time, and I remember missing an Economics lesson, (my favourite class) as I had to go and get tested. When the results came back, I was told I had FA as well, but our older sister, Anne-Marie didn’t.”
James and his mum went to the library to try and find out more about FA, but at the time there wasn’t much information. “I just knew that I had a rare genetic disease and that most people didn’t live beyond 16, that’s a tough thing to hear when you’re 15!” he says.
James didn’t let his diagnosis hold him back. “All my friends were planning on going to university.” He tells me, “I just pushed Fanconi Anaemia to the back of my mind and got on with things. For ages, the only time I acknowledged it was going for scans and checkups.”
“I was 31 when I was offered the chance to relocate to Essex, Newcastle or Dubai. I talked with a friend about the opportunities, and I chose Dubai and I soon found myself living the high life in an apartment on the 62nd floor of a skyscraper! I was lucky to live in Dubai for six and a half years. What a great experience!”
During his time in Dubai, in 2014, James’ sister Shelly developed cancer on her tongue. “We know that mouth cancers are common for people with FA, but until then I think we both somehow hoped the diagnosis was wrong, because we hadn’t had any ‘typical’ symptoms.” James tells me.
Despite the added complication of being Bipolar, Shelly got through the first cancer treatment, but a few years later in 2017, she died aged 40. She had developed a throat tumour with other complications. “I was still living in Dubai but I was flying back and forth frequently, trying to support her (and my mum) as much as I could.” James remembers.
“After she passed away, FA was very much at the forefront of my mind.” James tells me, “I was 35 at the time and it was unusual that I’d had no symptoms at all, so I spent some time with the genetics team, did all the checks again. Everything was ok, but FA was still very much there.
At that time, I made the conscious decision to travel, explore and live as much as I could. When I met Catherine, who became my wife, we travelled together and made the most of living abroad. Good memories help you in difficult times. I often think of all the good times we had together and with friends” James explains.
“After all the travelling and enjoying life together, we decided to move back to the UK and get married.” James tells me, “I knew FA would be tough on my relationship. I remember we spent a weekend glamping in the Cotswolds where I told Catherine that I was likely to get very ill at some point and I would understand if she didn’t want to commit. It was a deep and difficult conversation, but luckily Catherine wasn’t deterred by this. We have always been able to talk about difficult things.”
In August 2020, James and Catherine got married in Stratford upon Avon, at the church where Shakespeare was buried, accompanied by only five family members, due to Covid restrictions. “It was a beautiful ceremony,” James remembers, “Then we held our reception in our back garden. It was perfect!”
A few months later though, James’ bloods showed signs of dropping and he had a bone marrow test in April 2021. “I knew the news wasn’t good when I was asked to come to the hospital and to bring someone else with me.” James tells me, “My consultant, who I’d known since I was 15 just said: ‘I’m really sorry but it’s time. We need to do something.’”
James had a bone marrow transplant in January 2022 at the age of 40. “We tried to use the bone marrow registers, but it was hard to find a match because I’m of mixed heritage” he tells me, “In the end my sister Anne-Marie offered to be tested and was a 50% match.”
James’s older sister has learning difficulties, and it was important to everyone that she fully understood the implications of what she was offering him. “I don’t want to underplay what she did for me in any way” he says, “but it was great they were able to harvest her T-cells though her blood, previously it was much more invasive. She was so brave and the highlight for her was a kit-kat chunky at the end!”
Like everyone who’s been through a bone marrow transplant and its aftermath, James found his time in hospital challenging. “Although they weren’t allowed to visit, my wife and my mum were a great support,” he tells me. “I also had a great set of friends who sent me daily jokes and a “track of the day” (a topical song to lighten the mood). These were often connected to things I had going on. One night my temperature was through the roof and the next day the track they sent me was ‘Night Fever’ by the Bee Gees. It’s a dark sense of humour, but it gets me though.” He smiles.
It seems this sense of humour is shared by his family. With the help of ECP, James is being treated for Graft Versus Host Disease, a common side effect of a bone marrow transplant, where donated cells see the body’s cells as a threat and attack. “My aunt kindly drew me a picture of my sister with boxing gloves on beating me up from the inside.” He laughs affectionately, “I’m still being beaten up by her, some things never change!”
This article is part of a new series where we’ll be profiling adults with FA as a way of showcasing their lives beyond their diagnosis. With this, we hope to encourage young people with FA to find their own way. If you’d like to be interviewed for our next newsletter, please contact katie@fanconihope.org