Keira was born with a fatal condition, a form of skeletal dysplasia so rare that no statistics of its incidence exist. Her grandfather, Echo journalist Alen McFadzean tells the story of her unique and tragically short life.

I HAVE a powerful and poignant memory of my granddaughter's brief life that will stay with me for ever. It is late one night in the Special Care Baby Unit at Darlington Memorial Hospital, when the wards are silent. I have just finished work at the Echo, and as I walk along the corridor I pause at a window that looks into the ward.

The ward is in darkness, but in the shadows I can see my son, Fergus, and his girlfriend, Coral, illuminated by the glow of an incubator. Their faces are pale and drained. But in their eyes I can see patience, devotion and love, as they cling to the hope that their child will survive.

And in the incubator, small and fragile, her poor little body wired up to all sorts of machinery, I can see my granddaughter, Keira.

It is a simple memory, nothing more than a snapshot in time, but it's one that I cherish for it brings home the extremes of emotion those young people endured, and the brief happiness they shared while their baby was alive.

Keira was a Monday's child. She was born on a Monday; she was discharged from hospital on a Monday after weeks of care; and she died on a Monday a few weeks later. It seemed strangely comforting and not at all inappropriate that, because of her rare condition and the necessity for a post-mortem examination, her funeral was delayed until the following Monday.

Looking back on the pregnancy and the seven weeks of her life, it's still difficult to come to terms with why she should have been singled out by the brutal and apparently random twist of genetics known as skeletal dysplasia.

In the time it takes to utter those two ugly words for the very first time, you find yourself empathising with the thousands of people you have read about in newspapers, or seen on TV, whose children suffer from debilitating illnesses or fatal diseases. One minute they are strangers with tragic stories; the next you are one of their number with a story of your own.

Only when this happens within your own family, when your son and his girlfriend tell you that the child they are expecting is not developing as hoped, and is not expected to survive many hours after birth, are you suddenly overwhelmed by the utter helplessness and injustice felt by those thousands of others, and the anger at your own inability to protect your grandchild.

After the initial shock has subsided, there comes a time when you begin to ask questions - such as what exactly is skeletal dysplasia, a condition neither you nor your family have heard of, but which has suddenly cast a very black shadow over your lives?

And you get answers you don't want to hear, from specialists who freely admit that they don't know all the answers themselves.

Skeletal dysplasia can be broken down into many sub-types. Keira's sub-type was a lethal form known as short-rib polydactyly syndrome type I/III.

The condition is so rare that the consultants at Darlington Memorial Hospital, and their colleagues at Newcastle's Royal Victoria Infirmary, embarked on a worldwide search for information and comparisons, contacting specialists across Europe and the US.

Between two and three births per 10,000 are affected by some form of skeletal dysplasia. Of this small percentage, an even smaller fraction - so small that the exact incidence remains unknown - suffer the short-rib polydactyly forms.

Their main characteristics are shortening of the ribs and limbs, constricted chest and underdeveloped lungs - which leaves the baby vulnerable to even the mildest chest infection.

The prognosis for the short-rib polydactyly syndromes is bleak: "SRPS are lethal conditions. Affected neonates usually die a few hours after birth from respiratory insufficiency, due to severe pulmonary hypoplasia."

During Coral's pregnancy, doctors remained unsure as to which form of skeletal dysplasia Keira possessed.

Termination was discussed, but Coral and Fergus decided that, while there remained a faint hope, the birth would go ahead.

On Monday, August 14, and five weeks premature, Keira was born, and surprised everyone by breathing unaided - though she was dependent on a supplementary supply of oxygen.

After several weeks of care and treatment in the Memorial's Special Care Baby Unit, doctors decided that the best place for Keira was at home - away from the hospital environment where it would be so easy to pick up a chest infection.

The prognosis was by this time slowly improving - but still bleak. Keira might live to be three or four years old, but at that stage of her development - when children experience a growing surge - her lungs would fail to keep pace with the rest of her body.

So Keira went home, one happy Monday, with her oxygen bottles, oxygen machine, and the other things that even ordinary babies need. And for what was a very happy and almost carefree period, she was wheeled around the North Yorkshire village of Barton in her buggy, cuddled by parents and family, and treated like any normal - though vulnerable - baby.

She was rushed back into the Memorial hospital on two occasions - on the second with a particularly nasty bronchial infection. But against all the odds, she pulled through after a heart-rending fight, and once again returned home.

The end, when it came, was swift and unexpected. Showing no unusual signs of discomfort, Keira suddenly stopped breathing one Monday morning. Despite frantic efforts to resuscitate her, and the expertise of ambulance service and air ambulance paramedics, she died on the way to hospital.

The post-mortem examination report listed a number of conditions, including chronic lung disease and acute bronchitis, and concluded that "Whatever the actual mechanism, death is ultimately due to the underlying skeletal disorder".

Seven weeks is a short time to spend in this world, and for us it was a time filled with mixed emotions, from the sublimely blissful to the desperately tragic.

For me, there is some comfort in the knowledge that Keira's life was not without purpose. Consultant paediatrician Dr John Furness sent flowers to the funeral, attached to which was a note. "Dear Keira," it said. "Thank you for teaching me so much in your short life."

If the knowledge gained by the medical world increases the understanding of skeletal dysplasia and offers hope of treatment to future victims, then perhaps her suffering was not completely in vain.

Family and friends have contributed to a fund for the baby unit. Staff at the King William IV pub, in Barton, are also raising funds. People wishing to contribute are asked to send donations, and make out cheques, to Darlington Memorial Hospital's Special Care Baby Unit.