Niki Shisler

Amidst all the current hoo-ha over the use of animals in medical research, the shock headlines of grave-robbing, animal rights and lengthy jail sentences, one voice has been conspicuously missing – that of the end-user, those people who are waiting on medical developments in order to ease suffering or prolong lives. People, in fact, like me.

My 7 year old son has a rare form of muscular dystrophy called nemaline myopathy (NM). Felix is profoundly disabled; he uses a wheelchair, a ventilator, he is tube fed but, most importantly, he is a bright, happy little boy who goes to a regular school, fights with his sister and dreams about Power Rangers. The first year of Felix’s life was touch and go, his identical twin, Theo, didn’t make it to his first birthday and, even now, Felix is classified as ‘medically fragile’. The bald truth is that we don’t know how many years we will get with our son. For families like mine arguments about medical research strike at the heart of our life. This is not, for us, a philosophical debate; it is personal.

I have lost count of the number of times I have stood at the foot of a bed in an intensive care unit, praying that my child would make it through the night. Desperately watching for the first signs that would tell me the antibiotics had started to kick-in. We are at our most vulnerable through our children and, as any mother will tell you, a critically ill child brings you fear like no other. These days Felix is pretty well stable, at least in the summer months, but I know we are never more than a heartbeat away from the next crisis. Knowing that in labs around the world a handful of scientists are working to find a cure for my son’s condition brings enormous comfort. It gives us hope and, as in the story of Pandora’s Box, hope is enough to fight all the fear and trouble in the world, a light to guide us on the darkest days.

Realistically I know that any cure is likely to come too late for Felix; but NM is a genetic condition, probably carried by my other children. A cure may never save my son, but it might save my grandchild. It may mean another family doesn’t have to suffer the losses we have; there is no doubt that, eventually, lives will be saved. For anyone dealing with currently incurable conditions, terminal illness or watching a loved one slide into dementia, medical research gives us hope and the strength to carry on.

I have heard animal rights protestors argue that this research is unnecessary, that today we have computer models and cellular research, the use of animals is outdated and unhelpful. This is simply not true. With my son’s condition I have spoken to some of the key scientists from Finland to Australia and the USA. There is great progress being made into all sorts of conditions at the moment, NM among them. The human genome project and the work on stem cells is producing exciting results. Some forms of NM can now be ‘cured’ in a test tube – previously abnormal cells transformed into healthy ones. But this is not enough. Now the scientists must find a way to deliver that ‘cure’ to every cell in the body, to have it replicate and persist. For this, there is no substitute for a living breathing organism. No computer program can ever hope to replicate the complexity of even the simplest mammalian body and so, when there is no other choice, when all other avenues reach the limit of their usefulness, science turns to animal testing.

Of course, this is not just about children like Felix and those with serious, chronic conditions. Every one of us benefits from animal research every day. Every time we take a painkiller, every time we vaccinate a child, every day in a thousand ways we take for granted the safety of products and medicines that we use and rely on. And we can only do that because of research that has, at some stage, used animals.

When I decided to speak at a demonstration in support of the new lab being built in Oxford a number of friends advised me against making a public stand. Didn’t I realise how dangerous and unreasonable the animal rights extremists could be? What about my safety? What about the safety of my children? I understand their concern and, I’ll admit, I had a few anxious moments on the journey to Oxford. But I also know that it is precisely because I care about the safety of my children, that I know how important it is that medical research continues. I want my children to grow up in world where they are offered increasing protection from deadly diseases. I want to know that I myself will live to see their children and, hopefully, their grandchildren. And I know that for my children, as for all of us, much of that protection is going to come from labs like the one being built in Oxford.

Last year the Hall family were, after years of horrific harassment, finally pushed to the point where they no longer felt able to continue with their business, breeding guinea pigs for research labs. The final straw was the theft of the corpse of the family’s grandmother, stolen from her grave. The Hall family had, unsurprisingly, had enough. When I heard that they had been forced to close I felt, at first, anger; and then shame. Shame that I had done nothing to prevent it. For months the press had reported the trials of the Halls and yet, like most people, I had just assumed that they would work on because ‘that’s what those people do’. And then the ALF crushed them, and I saw how I, how we, had abandoned them; too scared to stand up and fight their tormenters.

The work done by medical researchers benefits all of us. Don’t ever try to kid yourself that this is not your problem. Anyone who has dealt with cancer, with diabetes, Alzheimer’s, antibiotics, vaccines; we are all end-users and we should never turn a blind-eye to that. The scientists who do this work live with threats and risks every day, and we let them. Every time they step into their labs, they do so for us. It is time for us to, in turn, look out for them. We can, and should, be joining together, publicly, to build a wall around them. To stand between those who are trying to help us, and those who would stop them. We have to stop leaving the scientific community to fight this battle alone.

May 2006