THE MUM WHO REFUSED TO GIVE UP

Charlotte Caldwell, 53, campaigned for her son's treatment and ended up changing the law...

- LOUISE COURT

As the nurse handed me my newborn baby boy, with his downy black hair and the bluest eyes, I thought he was  safe in my arms at last. I’d lost his twin early on in pregnancy and had been confined to hospital, waiting for Billy to be delivered six weeks early by caesarean. I had no idea I would spend the next 15 years fighting to keep him alive.

We created a happy routine at home – until Billy was four months old. Then one day I noticed he’d become chillingly still, eyes wide, staring at the ceiling. happened again. I was told to take him to hospital. In the back of an ambulance, he had his first full-blown seizure, which racked his body for seven-and-a-half hours, non-stop. It was terrifying.

Hours later, a nurse took me to see him. ‘Hold his hand, Charlotte, he is alive,’ she whispered, as I look at my exhausted baby lying on a huge hospital bed, surrounded by machines and tubes. I lay next to him and cried. A doctor later told me he was going to die and it would be better to let him go. But how could I when he had fought so hard to live? When we were finally allowed home, I was given a discharge letter saying he wouldn’t live past his first birthday.

MULTIPLE FITS