When Georgina Fowler was born 19 years ago, there was no way of knowing that she had a condition that made her, quite literally, one of a kind.

It was not until she was three years old that doctors were able to put a name to the condition she had been born with - myotubular myopathy.

"Until then," says Georgina's mother, Linda, "it had been a process of elimination, with a few red herrings along the way.

"Conditions like myotubular myopathy are sometimes hard to diagnose. All we knew was that Georgina wasn't right. As a baby she was floppy and didn't feed, then as she got older she didn't hit developmental milestones and did everything higgledy-piggledy. She was all over the place."

When every other possibility had been ruled out, doctors did a muscle biopsy.

"They said, though, that they didn't expect to find anything, but they did. It was a relief to finally have a diagnosis, to know what was wrong with her," says Linda.

Myotubular myopathy is a rare and profound muscle disease which affects mainly baby boys and is life-threatening in the extreme. Only 25% of boys born with x-linked myotubular myopathy survive through their first year and only 1% beyond the age of 10.

Georgina, who has the recessive form of the disease, has also been diagnosed with a cardiomyopathy, making her the only person in the UK to have both myotubular and cardiomyopathies.

"She has fought very hard," says Linda of the daughter who has recently embarked on a BA Hons Contemporary Applied Arts degree course at Hereford College of Arts.

Georgina is not the only artist in the family, though, and Linda, who trained as a textile designer, but gave up work to care for Georgina, has now employed her own artistic talents to produce a calendar, which was launched at London's V&A Museum at the Myotubular Trust's first family conference earlier this year.

"Georgina was my inspiration for the calendar, which I've created to raise both funds and awareness for the trust," says Linda, who has painted 15 favourite places' chosen by researchers and clinicians in the field ofmyotubular myopathy in the UK and Europe.

All 12 paintings are on display at the Tidal Wave Gallery in Bridge Street, until October 20, where copies of the calendar are also available. They can also be bought via the website at www.myotubulartrust.org