TINY Kieran Preston was born nine weeks ago - but his parents have no idea how long he will live.

One of his sisters, Kristen, died when she was two months old, while another, Stacey, is disabled and facing life in a wheelchair. She will be four in October.

The scourge of the Preston family is mitochondrial disease - an incurable, genetic condition which affects about one in 50,000.

The chapter of tragedies would have destroyed most families, but Paul Preston has turned incredible adversity into his own crusade.

Since Kristen's death, Paul, of Clough Road, Bacup, has spearheaded a campaign to raise the profile of the condition.

Apart from giving up his job as a transport supervisor and relocating from Cheshire to a fully-adapted home in Rossendale, he has also travelled to Paris and Philadelphia to discuss the lack of knowledge and information about the illness with medical professionals.

His effort will be recognised tomorrow when he helps to launch the European Mitochondrial Disease Network (EMDN). Present at the launch will be actor John Savident - Coronation Street's Fred Elliott - who has agreed to be patron of the organisation.

The charity will be the only organisation in Europe specialising in the complexities of mitochondrial disease and will provide information to patients and professionals.

Paul, 29, said: "John Savident is keen to raise the important profile of mitochondrial disease. He feels the subject is very much under-represented, misunderstood and that the condition will always take second place to more popular and more publicised conditions.

"He feels due to the gross lack of understanding, financial support for research is a non-starter.

"But EMDN needs and requires urgent support for funding to pursue issues including genetic and treatment awareness."

The disease affects the mitochondria, tiny bags containing enzymes required for the building and breaking down processes of cells and for the conversion of glucose and oxygen into energy. In almost every case the condition is passed on via the mother's side.

But there is a lack of understanding about the illness, both within the medical profession and among parents and Paul is aiming to raise that profile.

For now, Paul and wife Rachel can only keep a daily watch on Kieran's health and hope that he emulates his other sisters, Kelly, 10 and Stephanie, seven, who appear to have escaped the condition.

For more information about mitochondrial disease or the launch, people can call 01706 870970.

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