Why my disabled son makes me the PROUDEST MUM

Motherhood has been anything but normal for Sam Weston, whose son has a rare condition

- KATIE SAATCHI, BETH KILGALLON

The moment you learn your child is disabled, life begins to move with unstoppable speed in a different direction. Yes, there’s grief, but you come to realise there are also successes and adventures you’d never have known otherwise. And a disability doesn’t have to define your family – despite the challenges, my son’s zest for life makes me feel like the luckiest mum and I wouldn’t change a thing about him.

My pregnancy with Marcus was perfectly straightforward. In fact, we joke that it was the only part of his life that’s been normal. I’d chosen not to have any genetic screenings during pregnancy, and had a water birth in October 2004. Marcus weighed a healthy 7lb 15oz and it was wonderful to bring home a baby boy, as me and my husband Gary, then 35, had had our daughter Joely, 19 months earlier.

‘It wasn’t the life we imagined’

Marcus seemed to feed well, but after a month, he weighed 1lb below his birth weight. We began formula feeding, but he was sick after every bottle, so at seven weeks old he was admitted to hospital with ‘failure to thrive’. I’m quite a positive person and I’d been relaxed up until that point, reassured by the fact this wasn’t my first baby and I was confident in what I was doing. But hearing that my son wasn’t thriving felt like a personal failure as a mother.

Doctors inserted a feeding tube to control what was going in, and for four months, Marcus was subjected to endless tests, scans and biopsies to determine why he wasn’t growing. We’d found ourselves in a frightening new world, one where doctors stood around our baby’s cot with no idea what was wrong.