The act, plus legal aid, helped my family to secure the help we desperately needed. Attempts to undermine it put us all at risk
If anyone had told me that my family would ever need disability benefits, legal aid or the Human Rights Act, I wouldn’t have believed them. I am sharing my story because my fear is that when the next family comes to need these same things, they will not be there.
Cameron was the youngest of our four wonderful children. He was born in 2007, and it quickly became clear he was very ill. He had to be rushed to Alder Hey children’s hospital for emergency surgery when he was only three days old. He was diagnosed with cystic fibrosis, then at 18 months we learned that he had Duchenne muscular dystrophy too. I remember the consultant telling us with tears in his eyes that Duchenne was a severely life-limiting condition and my wife and I replying in unison that it would not limit Cameron’s life.
You see, we had already begged him to fight when he was three days old and promised him that if he could not live long, then we would do all we could to help him live fast. He took us at our word, and lived a life of love and laughter, pedal to the metal and without fear, for five and a quarter magical years, despite all that was thrown at him.
This coming Saturday would have been his 14th birthday, a day we celebrate his life and the happiness of his childhood despite extraordinary challenges. Two years after Cameron’s death, we won a landmark appeal that allowed us, and other parents in our position, to continue claiming disability living allowance while caring for Cameron in hospital – after those benefits were taken away from us. This year is also one that brings me a great deal of trepidation about the direction of travel for justice, rights and protections in this country.
I am saddened that the government now appears to be seeking to further reduce protections for all of us by watering down the Human Rights Act – the legislation on which we based our case – via the current review being conducted by a former judge. The Human Rights Act is not just one of the ways for UK citizens to challenge government decisions we deem to be unfair: it is really the only way.
That should scare everyone in this country. Of course, I hope no one else finds themselves in the position my family and I found ourselves in, but it could be any one of us.
The interplay between Cameron’s conditions and a blood-clotting disorder they caused was devastating, and my wife and I had to give up work to care for him during long, repeated stays in hospital, through surgery after surgery, struggling to get him home again with his sister and brothers.
We did not claim any benefits for Cameron until we had spent all of our savings and sold every last asset. Then, we reluctantly accepted that we had reached the end of the line and had to ask the state for help. We count ourselves lucky to this day that we live in a country that allowed us to effectively retire during Cameron’s life to do our best for him and his siblings. A country where generations of us selflessly pay in to help others, without thought for what and when we may ever get back.