ONE-year-old Harry Churchill is an affectionate and bubbly little boy who loves cuddles and playing peek-a-boo.

With his smiley nature he should be attracting admiring coos – but instead he is starred at and whispered about, and his devoted parents have been accused of hurting him.

It is a cruel twist to an already devastating disease which doctors said would claim his life within a few months of his birth.

Harry has a rare and serious genetic skin condition Epidermolysis Bullosa (EB). His fragile skin blisters with friction, and the weeping and bleeding wounds do not heal.

It also affects his airways – so much so he can now only breathe through a tracheotomy tube in his neck. Heartbreakingly, with no air passing his vocal chords, when he cries now it is without a sound.

He has spent more than half his short life in hospital. By reaching his first birthday last month he has already defied the doctors’ expectations.

But not only do his parents Chris Churchill and Steph Green from Poole have to deal with the daily struggle to care for him – but also the judgement of ignorant strangers.

Steph, 19, told the Daily Echo people had stopped her in the street to tell her she was an unfit mother and that she ought to be ashamed of herself.

Others pull their children away, mistakenly thinking Harry’s condition is contagious. Every time they leave the house they encounter staring and whispering.

“It really, really gets to us,” added Steph, who now avoids going out with her son when she can. “I shouldn’t have to hide my son away.”

“If people really knew us and what we’ve been through, they’d know differently.”

Steph and Chris want to raise awareness of the rare genetic condition which effects one in 17,000 babies in the UK. Only a tiny proportion have EB it in its severest forms like Harry.

The pressures of caring for him are relentless and Chris has given up his job as a lift engineer to do so.

Dressings must be carefully applied daily, including on his fingers and toes, where he has lost all his nails.

A patch on his tummy where the skin was ripped off by surgical tape around a cannula before he was diagnosed still hasn’t healed a year later.

His parents must clear his tracheotomy tube with a special machine up to 100 times a day – and through the night.

Harry showed no signs of the horrific condition when he was born. His diagnosis at two months was a hammer-blow to his parents whose twin daughters were stillborn in 2008.

Steph said: “Because we lost our twins, when he was born it was such a big relief. When he got ill, it was like ‘Why is this happening to us?’

“But I think special children are given to special people who can deal with it. If it wasn’t for the twins I don’t think we’d have coped at all – we know how lucky we are to have Harry.”

“We still don’t know how long he’s got, but it’s great he’s home and we can live our lives and spend some quality time with him,” said Chris, 23.

But despite the pain his condition must inflict on him, Harry is a happy little man.

Chris said: “He keeps us going. When he has a bad day we’ll have a bad day. He’s our world.”

“He’s a credit to us,” added Steph. "If he didn’t smile as much I don’t think we would have got through this. If he’s happy, we’re happy.”

For more on EB visit debra.org.uk