I've Never Cuddled My Son

But Tanya’s brave boy couldn’t be more loved.

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Tanya Williams, 33, Bolton

My little boy Rhys took his first few tottering steps across the living room and I burst into applause.

‘Well done!’ I beamed.

But next minute, his smile vanished as he tripped over.

Instinctively, I reached out to grab his arm, to steady him.

But to my horror, a handful of his skin came off in my hand.

Poor Rhys screamed out and I felt dreadful.

‘I’m sorry, darling,’ I said. He was in so much pain.

And yet I couldn’t even  comfort him with a cuddle.

See, after Rhys was born in September 2005, he was diagnosed with a severe case of a rare skin condition called epidermolysis bullosa (EB), which means his skin literally falls off at the slightest touch, leaving painful sores and blisters.

Doctors warned us from the beginning that there were huge challenges ahead.

Taking Rhys home, me and my partner Mark were petrified of hurting him.

Just giving him a bath was very traumatic.

He would scream in agony. Sometimes, it was so bad, he had to be wrapped head to foot in bandages.

Chaotic lives

Rhys’ condition also caused internal blisters. He was unable to eat normally, and instead was tube-fed overnight.

Like any parents, we just wanted to cuddle our boy and reassure him.

But each time we touched him, he would cry in pain.

I realised then that I’d never scoop him up in a cuddle or give him a bear hug.