Hi everybody,
I was there yesterday evening with Louise as we read the comments on the Daily Mail article. At first, I did feel the hairs on the back of my neck stand up and muscles in my dead arms want to throw the laptop across the room. Then I looked down the list of comments than they realise that the proportion of comments which accused me of being inconsiderate and selfish for bringing Oscar in the world were far outweighed by those condemning such a viewpoint and offering kind words of support.

It also occurred to me, that I have never discussed this issue with you, so any criticism offered is being done so from a position where you are all not in possession of the full facts. Louise has already given you her viewpoint, but as you can imagine our reaction to things like this are quite different, which is not to say either is right or wrong.

The basic facts are as follows. Firstly, the death of my grandfather and then my father could not be proved to be a hereditary strain of the disease due to both a lack of genetic material and the fact that technology for comparison if there had been was nowhere near as sophisticated as it is now. When I was about 22, I went to see a genetics specialist who offered to take on my case to source genetic material from both Grandad and Dad. After six months of research, the specialist came up blank. All he could offer was a 50-50 chance that I would carry the same defective gene which led to motor neurone disease in my father and grandfather, and even that was a guess.

At this stage in my life, all I had was essentially a flip of a coin to base every life changing decision on. I made my decision instantly. [What are] the chances of being hit by a bus, contracting cancer in its many forms? As it happens motor neurone disease does not even appear on the top 10 diseases killing men in the UK today. It’s most likely that lack of this knowledge prompted some members of the public to respond as they did in the Daily Mail article. In addition to this, the familial form of MND is much, much rarer still than the sporadic version. The decision I made was to live my life to the fullest, to work in my life the hardest, and to love those I love in my life as deeply and powerfully as I could.

So, the next question would be do I resent my parents for my birth and the 34 subsequent years of enjoyment? What do you guys think? No, I do not.

Did I wish that this had been inflicted on Louise? Of course I did not. I could no more have guessed that this would be our ending no more so than I could have known that party would be our beginning.

Oscar. We spoke before our marriage about the prospect of raising a family, where two people had suffered with MND. We decided that our family was more important to us than trying to play the odds in a game where no one knew the rules. He is guiding light through these difficult times. Will he miss me? I hope so. But we have the closest, most loving families and friends that he will want for nothing.

So do I regret our decision to have Oscar? I would do it exactly the same a thousand lifetimes over.

I hope this clarifies my reasoning to those who question it. If not then please ask any other question you may have.
Much love,
Neil

We had come to realise that our story was more interesting to the newspapers if it were a ‘Save Our Son’, something that I have never been comfortable with and come to regard as lazy journalism. I even had one newspaper ask me to write a letter to Neil in the run up to the first anniversary of his death, which was very emotional for me but I wrote it, and then the editor deemed it not newsworthy unless it took the form of a plea to save Oscar.  If the journalists dug a little deeper they would realise that the physical horror of motor neurone disease combined with the lack of research funding is sensational enough to sell papers on it’s own, at least it is in my eyes. Thanks to I AM BREATHING, our story now has another way of generating interest and highlighting the disease.

I clearly remember the discussion that Neil and I had about children. His grandfather had died aged 60, his father had died aged 50. I posed the question to Neil, ‘If you knew you were going to die aged 50, would you ask never to be born?’ That was all we had to go on before Neil was diagnosed at 34.

I can only raise Oscar free from fear as I would if motor neurone disease didn’t exist. If he ever were to develop the disease, and there were still no treatment or cure, I would hope that he would recognise and feel comfort from the fact that both of his parents made a huge effort to change that prognosis for him. I would hope that in documenting his father’s bravery, it would give him the courage and to face it with a similar outlook. Anyone reading this blog from the beginning knows how much the anger and disappointment sat side by side with love and laughter.

Oscar is privileged to have such a documentation of his father’s attitude toward life and the love he had for his son and all those around him. With regard to motor neurone disease, I can’t arm him with anything better... yet. – Louise (2013)