BATTLING baby Kane Sutcliffe is one in 5,000 children to be born with the rare disorder golden har.

He has already undergone a seven and-a-half hour open heart operation when he was just three weeks old, and had a tracheotomy and a feeding tube fitted.

His mum Beverley finished her nursery nurse training at Burnley College just two months' before Kane was born in August this year.

She said: "I followed all the rules when I was pregnant, ate and drank the right things, but apparently the disorder forms in the first eight weeks of pregnancy and there is nothing you can do about it. A one in 5,000 chance, and it happened to me.

"I went into Burnley General Hospital to give birth, expecting to be in for 48 hours. I came out of hospital nine weeks later."

When he was born he was moved into the special care baby unit at Burnley because he had difficulty breathing. He was transferred to Alder Hey Children's Hospital in Liverpool at three weeks, where the disorder was identified. His jaw is set back, he has a cleft pallet and he struggles to breathe without swallowing his tongue, so a tracheotomy was performed. Then medics realised his heart veins were connected wrongly and he had corrective surgery and a by-pass when his heart was just the size of a walnut.

For the last five weeks Kane has been at home at Blackshaw Street, Todmorden, with parents Beverley, 24, and Andrew, 28, a worker at Smurfit Paper and Board Mill in Burnley.

He is progressing like any other baby, smiling and holding his head up, but cannot speak because of the tracheotomy, and is partially deaf because of the disorder.

Beverley said: "When he was in surgery the doctor came to see us and asked us to go into a separate room. We thought we had lost him, but then he said, 'The next 12 to 24 hours were the most important' - he had survived. "He explained they had to restart Kane's heart three times after the surgery. We are just so glad he is here, he is brilliant. I don't care what is wrong with him. Because of my training I have been involved with children like Kane, so it doesn't bother me. I am aware of what he needs and the right people to see. There is also a support group and I have already been in touch with them."

Kane visits Liverpool once every three weeks and has regular physiotherapy and check-ups at Burnley.

It is expected he will have the tracheotomy removed and surgery on his cleft pallet at 12 to 18 months, and hopefully his jaw will right itself. His aunt Emma Ingham has already raised £473 by holding car boot sales

The family have been given a vast array of equipment for Kane, including suction machines, monitors and nebulisers, with the money they are hoping to buy replacements for Burnley and Calderdale Health Care Trusts.

An account entitled Kane Sutcliffe Trust Fund has also been opened at Barclays Bank in Todmorden.

Converted for the new archive on 14 July 2000. Some images and formatting may have been lost in the conversion.