On 21 July 2003 our son Tom was born at home. Within minutes he turned blue and the paramedics rushed in. Tom made it though. But this wasn’t the end – rather the beginning of a process with which we were to become all too familiar. Our son struggling for life – blue lights, emergency ambulance trips and Tom giving it all he had.

Tom had myotubular myopathy and we were told to prepare for the worst. What we got was the best. A son who filled our hearts with love and joy, and lots of laughter, despite the constant emergencies, his utter frailty and the heavy strain. All the colds of his first couple of years took him right to the edge over and over but he made it through every virus – against the odds we were told were stacked against us – we were incredibly lucky to have an exceptional and very courageous physiotherapist who understood him and his breathing issues really well.

Tom was bloody-minded and determined but also quiet and gentle, by necessity. He spoke in whispers and mainly communicated by sign language but managed to be cheeky, funny and engaging despite the lack of noise. He loved his sister more than anything in the world, and she was his best friend. Tom made so many life long friends for our family by drawing wonderful people to us, and we were so lucky to have him out and about as part of our local community.

What Tom taught us about life was humbling. He was brave, calm and intelligent in the face of such a hard struggle and he never complained. He simply showed us how to be happy in the moment. And this frail, small child whose life hung in the balance literally every day, seemed wiser and kinder than us all. We really thought we’d keep him forever.

Tom died in 2007 just before he turned 4, and his going left a huge hole but we also remain conscious of how lucky we were to know him. He was a truly wonderful boy and made an enormous impact on those who knew him, no matter how ‘grown up’ they were. We feel privileged to have been his family.

Anne, Andrew and Sophie Lennox, and baby Rory who seems to be trying to live for two boys!