A Special Little Boy

Looking back now, the word I would use to describe my childhood is 'exciting'. This may not seem the most fitting description for a childhood that began with a death sentence, but then there's nothing like the nearness of death to make you want to live. And to live your very best life. As you'll see, that's what I've always tried to do. Faced daily with my own mortality, I chose to live fabulously-each of my fifty-five years has been full of love, laughter, adventure, friendship, and feather boas. As a child, I was helped in this by a wonderful mum, who is at the heart of my story, and by fantastic grandparents, who were determined that their grandson would not miss out on anything. If I couldn't do ordinary things, like climb trees, then I would be given the chance to do extraordinary things, like be the first boy in our school to fly on a plane.

I was born in a terraced house in Letchworth (the first garden city!) on 24th April 1969. My dad was from a big family, who I grew up surrounded by. I was always close to Dad's Sister, Rose and her four, daughters Beverly, Deborah, Tracey, and Claire, but I think it's fair to say my dad and I have not had the easiest relationship. He was a very good provider, who worked hard for the gas board, so that we wanted for nothing. He is of the generation where the woman stays at home and cooks dinner while the man goes out and digs holes, comes home for food, and then goes out again to the pub. My mum, Doris, or Dot, more than made up for any emotional connection that I lacked with my dad. Mum and I were always extremely close-she was my support, my champion and my best friend through thick and thin.

Mum wasn't actually a stay-at-home housewife-she used to work on the switchboard at Marmet Prams (favoured by royalty, don't you know!). After taking time out to have me, she went back to work, leaving me in the good care of her friend, Rosie. One afternoon after work, Mum found Rosie in a right old state.

'I don't know what's the matter with Mark,' wailed Rosie. 'Look at his side!' Mum was horrified to see a huge dark-purple bruise, which seemed to have appeared without any explanation. I was about eight months old at the time. Retrospectively, my parents think I probably just leaned on the side of the pram, which caused an internal bleed. At the hospital, they diagnosed me with Christmas disease, said there was no treatment for it, and sent me home.

My second misdiagnosis occurred when another internal bleed caused my whole arm to turn black. This time, they said it was a disorder called Von Willebrand's disease and that they weren't going to treat it because there was a chance I may have become immune to the treatment. So once again, nothing was done.

The signs were all there if you knew what you were looking for. But of course, my parents didn't know. As a baby starts crawling, haemophilia really starts to show itself-because the baby gets bleeds in the knees. When Mum went to the clinic to check on my weight and health, she couldn't understand why she was being asked so many questions. Later, she realised they obviously thought there might be abuse because of all the bruises.

People often assume that, as a haemophiliac, blood spurts everywhere. However, it's more that you bleed normally, but the bleeding doesn't stop. On one occasion as a baby, my mouth started bleeding-in the area between my lip and gum. When it wouldn't stop, we went to the hospital; they packed the bleeding with gauze and sent us home. I wouldn't stop screaming. Mum knew I was hungry, but every time she tried to feed me, I would be sick. So there I was-starving, bleeding, and screaming.

I've often thought about the impact this would have had on my parents-how terrifying it must have been, especially for my mum. I guess this was just one of the many times she felt helpless because she couldn't ease my pain. Back at the hospital, a doctor examined me; Dad saw him take something out of my throat and put it in the bin. When the doctor left the room, Dad told Mum what he'd seen, and Mum looked in the bin. The gauze was there-it had obviously become dislodged and gone down my throat. No wonder I couldn't eat. When the doctor came back in, Dad asked him about it. 'It's nothing for you to worry about,' said the doc. That was it for my dad: it was like a red rag to a bull for him. He pinned the doctor up against the wall and snarled, 'It is something for us to worry about. Now, what's just happened?'

'It looks like some gauze went down his throat,' admitted the doctor. 'But he should be okay now. We'll do some tests.'

'You're not mucking about with him anymore. He's coming home.' And that was Dad's final word: there was no messing with my father once he saw red. He had a terrible temper; he believed in tough love and ruled the roost with an iron fist. We spent all our time walking on eggshells hoping he wouldn't start.

Dad was also of the generation who didn't do feelings. I would disappear off to hospital not knowing if I would ever be home. But Dad just carried on like nothing had happened. It was only when he came home from the pub late at night that he would get Mum to wake me up and try to do fatherly things-like teach me how to tell time.

I was finally diagnosed with haemophilia, thanks to my nan's trip to the hairdresser. Mum's mum, Nanny Banham, was having her hair done when she got chatting to a lady about me and my inexplicable bruising. The lady said she'd heard on LBC radio that Great Ormond Street Children's Hospital was the best in the world, that Harley Street doctors worked there, and that people flew in for treatment from all across the globe.

So that's how, one day after my third birthday, on 25th April 1972, I was taken to Great Ormond Street by Mum and Nanny and Grandad Banham.

I can picture myself holding my mum's hand in a dimly lit corridor, as we found our way to the right department, to meet a man who would change my fate forever. The world outside was becoming smaller as the new 747 jumbo jets heralded a new era of aviation. And my world was about to be catapulted into a whole new direction.

I had a diagnosis within three hours. It was severe haemophilia A, a rare bleeding disorder in which the blood does not clot properly. At the time, life expectancy for haemophiliacs was not good; if you lived beyond twenty-one, you were lucky.

What a bombshell that must have been for my parents. Our family's lives were changed forever, as we were plunged into a completely abnormal way of living. But at least we now had a diagnosis, and I was being cared for at a world-renowned hospital. As a haemophiliac, the slightest bump could give me an internal bleed that would require urgent hospital treatment. My mum was given a direct number for ambulance control, which she was to call any time, day or night. We soon got to know every ambulance driver in Hertfordshire; they were very kind to us, and they became my aunties and uncles.

One standout memory is from Christmas 1977, when 'Auntie Pam' told me she had a treat for me as she drove me home from the hospital. She took me all around Oxford Street and Regent Street in the ambulance so I could see the Christmas lights, which were a spectacular laser-beam display that year. Little things like that made a huge difference.

For haemophiliacs, pain becomes a familiar part of life. You want to try and avoid internal bleeds, but that's impossible if you also want to have any semblance of a normal existence. If I banged my arm or leg at nursery or at school, the bleeding wouldn't show itself immediately but I would get the feeling of something brewing. It's difficult to describe-a tightening and a sort of fuzzy sensation, followed by the area heating up, then the pain. The bleed would start to show itself by the evening, and sometimes, if there was a build-up of blood in a joint, it was such agony that I would tell Mum to shoot me.

My days were taken up with long ambulance journeys to the hospital in London. My poor mother spent half her time in the back of an ambulance-sometimes I might spend five out of seven days in hospital. In addition to the internal bleeding, I also suffered from nosebleeds, which added another level of danger to my condition. I would come downstairs with blood running from my nostrils and Mum would try to keep me calm as we waited to see if it would stop. Sometimes they did and on other occasions Mum would have to call the pub to let Dad know, then call the ambulance to rush me off to hospital before I literally, bled to death.

I remember lying in the back of an ambulance, blood running everywhere, hovering in and out of consciousness, and looking into my mum's eyes. She too, was covered in my blood, and even as she tried to keep me calm, I could see her fear of watching me bleed to death in front of her.

There was one occasion when the situation became even more critical because the ambulance broke down-smack-bang in the middle of Staples Corner. We couldn't have caused any...