THE BLOG

The Story of a Boy Who Nearly Wasn't

19/02/2014 14:37 GMT | Updated 20/04/2014 10:59 BST

Last week Belgium's government voted to pass into statute an extension of their current euthanasia law allowing it to cover children who are sick or disabled. I have already made my views known on the whole concept of euthanasia and assisted dying on the pages of this esteemed web based publication but just so you know, I am strongly against. One of the reasons why I find the current public shift in favour of the concept of assisted dying so worrying is it may lead to a slippery slope where all people who are sick or disabled are viewed as being candidates for "mercy killing". Worryingly to me, if some of the comments when the Huffington Post broke the story on the changes in Belgian Law are anything to go by, there are many people who read the Huffington who feel the UK should follow Belgium's lead. With this in mind I feel I should try to counter act these views by telling you a story.

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In August 1965, Joyce McGrath gave birth to a baby boy. Her husband Michael was so happy that he ran through the streets of their home town of Luton hugging strangers and handing out cigars. They had been trying for several years and where overjoyed at finally being successful in their drive to start a family. After a short stay in hospital, to allow Joyce to recover from the delivery, mother and son came home. Waiting for the boy was a tiny Luton Town football strip, and a house full of love. However baby Michael, for it had been decided to name the new born after his father, would not stop crying. All the medical professionals who visited the house decried Joyce for being a panicking mother, and baby Michael would soon quiet down. He probably had wind, or was picking up on mother's anxiety. The crying did not stop, and after five weeks of nonstop screaming both parents where at their wits end. Then it did stop, but not in the way everyone had hoped. Instead this baby so wanted by both parents began to find it hard to breathe. Luckily Joyce's close friend had been a nurse and after one look at the panting, gasping baby insisted they rush him to hospital. As soon as the baby was seen a roller coaster of treatment began. The family were rushed off the Great Ormand Street Children's Hospital in London and Joyce and Michael were sat down by a senior doctor, to be told that their baby had a huge cancerous tumour growing inside him. It was called a Neuroblastoma, and was very rare and almost impossible to cure.

The stunned parents did not know what to do. They OKed provisional treatment while in a daze. As the days went on and they saw how ill their baby was they plucked up the courage to ask the surgeon if it was not a better idea to stop treatment and to save their little boy from this suffering. The chief consultant, Mr L.G. Capra, replied that their baby was a fighter and they should fight to give him every chance. He had placed baby Michael on new drug trial for a chemotherapy drug called Vincristin Sulphate and once they had surgically removed as much of the tumour as possible, chemotherapy would begin. Baby Michael had his operation, began his chemo and seemed to react well. Within six months he was allowed to go home, while still having to travel twice a week for further chemotherapy and check-ups. His parents where told that while he was reacting well, it was unlikely that he would ever sit up, ever walk and would most likely die before the age of five. They were told to enjoy their time with their little boy because it was unlikely to last very long.

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As you may have guessed, that baby was me and forty eight years after my diagnosis I am still very much alive and kicking. I obviously made it past the age of five, did sit up and walk. In my life I have achieved some amazing things, despite a complication of my cancer treatment causing me to become a wheelchair user at the age of fifteen. I have traveled the world as a broadcaster and musician, appeared and presented on TV and radio shows all over the world, and I continue to live a wonderful, fulfilling life. Most importantly I am very happily married to my amazing wife Diane. All in all my life has been one that most non-disabled people might dream of, yet if a law like that just passed in Belgium had existed in the UK when I was born I doubt I would have ever made it past my first few weeks of life. Of course I was very ill as a child, and from the outside I imagine I appeared to be suffering massively. As the person who was that sickly suffering child I can promise you that for me all of this period was just "normal". My parents spoiled me rotten and when I look back on my early childhood all I remember is happiness. Even my regular stays in hospital are fond memories, of new friends, fun food (like ice cream on tap) and lovely nurses cooing over me. Sure their were operations and other yucky stuff, but I was asleep for the surgery and the rest of it has been whitewashed by my memory. The brain is an amazing thing, it just cuts out all the awful stuff and leaves you with a kind of highlights reel.

I ask you all please give sick and disabled children a chance. It might seem from outside that their suffering is intolerable, but as someone who has been through it all, the bad times will be forgotten if they pull through. Even if they do not, the short time that their family spends with them can be joyful and that is all the child wants. Love and happiness. I know my parents cried themselves to sleep every night now I am an adult, but as a child all I saw was happy smiling faces. Whatever your views on Assisted Dying, this is a step that we must NEVER take. To allow the state or medical profession or heart broken parents to decide if a child has no hope might seem like the right thing to do, but we are advancing at such a rate that we never know what is round the corner. If I had been born two weeks earlier I would never have been put on that drug trail and so would have died. Sadly it can sometimes be that close, but it proves there is always hope. Imagine all of the joy my parents would have missed out on if it had been decided to allow me to die... yes, and some of the other more stressful parts of parenting a head strong cancer survivor. Sorry Mum.

I should also point out that the drug successfully tested on me, went on to be used to treat childhood Leukemia. At the time of my birth this type of cancer was also incurable, but it is now over 80% beatable, partly due to the drug that worked for me.

That's my story, and I hope when you consider the concept of euthanasia, especially for children, you remember it. Just to pull at your heart strings even more, here is a cine-film of my family taken during my cancer treatment.

All photos & video © Mik Scarlet