Scampering around his grandfather's music shop, banging drums, rattling tambourines and plonking on a piano, Morgan Holmes is every ounce the mischievous two-year-old.

Despite his energetic capers, the exuberant tot is completely unaware of the tracheostomy tube that protrudes from his neck which been part of his life since he was a few months old.

Morgan is one of just 75 children in the country said to suffer from a rare condition known as Goldenhar syndrome, which leaves babies with underdeveloped facial features.

He was born at Swindon's Great Western Hospital without a right eye and ear and at one time came close to death after spending several weeks on a life support machine.

However, since the "tracky" was inserted Morgan hasn't looked back and keeps his mother, 24 year-old Swindon College hairdressing student Kerry Holmes, permanently on her toes.

Now Morgan's family is raising funds and awareness for the support group that helps sufferers of the mysterious illness whose cause has baffled experts since the condition was recognised in 1952.

They have instigated a string of fundraising events, including a nude calendar featuring Swindon musicians and a number of charity concerts.

Hugging the youngster during a rare break from high-spirited high jinx yesterday, Miss Holmes said: "He's lush. He's so special. I love him to bits. I don't care about any of these problems. He wouldn't be Morgan without them."

Miss Holmes and Morgan's father, Nathan Sharpe – with whom she has since split – knew months before his birth that there would be problems following the first pregnancy scan.

It revealed their baby had too much fluid in the ventricles of his brain and several inconclusive scans followed, during which experts were unable to say how the child would be affected.

"It was difficult during those months. We didn't know what would happen. It was a waiting game," she said.

Morgan was delivered with forceps on February 7, 2007. His mother recalled: "I remember saying 'Just give me my baby'. I hugged him and I realised he only had one eye."

It was three weeks before experts revealed that Morgan, who was also born without an ear and an undeveloped jaw, had Goldenhar syndrome .

There is no known cause for the rare condition, which affects babies in different ways.

Miss Holmes said: "During the pregnancy we feared he could have brain damage. But he's fine mentally. It's just the one side of his face that is affected."

When Morgan was two months old Miss Homes, who lives at Churchward in Swindon, was shocked to find the tot suddenly turning blue after becoming unable to breath.

The baby was rushed to hospital where he was put in an oxygen tent for about two weeks. Morgan improved but then dramatically deteriorated.

Miss Holmes said: "I was woken up at about 3am in my hospital bed. There were problems. His condition had got worse and worse. They put Morgan on life support. It was a horrible moment. I remember crying for hours but then thinking 'I've got to deal with it'."

She was told that Morgan had a twisted windpipe and that his best hope was to have a tracheostomy – a hole cut into his throat – that would enable him to breath.

The operation was a success and Miss Holmes now changes her son's 'tracky' once a month.

Morgan meanwhile is on his second glass eye, having undergone eye molding treatment at a London hospital. "It doesn't bother him at all. He takes it out and plays with it. In fact, he's dropped it down the toilet a couple of times," she said.

Morgan faces further eye molding next month and when he is seven he will undergo cosmetic surgery on his ear. In later years he also faces further surgery to repair his jaw.

Miss Holmes soon hopes to get Morgan into a nursery to mix with other children and is desperate for him to go to a standard school

The tot, meanwhile, seems unfazed by all the problems and fuss. His grandfather is Alan Holmes who runs the Holmes Music Centre in Faringdon Road.

The shop is a musical playground and Morgan has to be reined in before he gets carried away. His mother said: "He loves music. He loves these instruments – especially the drums."

Both Miss Holmes and her father are keen to help and publicise the Goldenhar Syndrome Family Support Group, which holds meetings and family outings so that parents and children can mix. A raffle will be drawn in May, and all the prizes – including a host of instruments and accessories – are currently on show in the Holmes Music shop window. Tickets are £1 per strip at the shop.

A Rocks Off For Charity gig in aid of the Goldenhar Syndrome Association is being held on February 21 at the 12 Bar, Westcott Place, Swindon. Another takes place at the same venue on March 20. Tickets are available from 01793 535713

More information about the condition is available at: www.goldenhar.org.uk