BABY Benjamin Wrigley has one of the rarest diseases known to man - and he could die at any time.But his parents are not dwelling on Benjamin's inevitable death and have started raising funds to research Menkes genetical disorder and other child illnesses.The incurable Menkes sickness is so rare that it is thought there have been only six UK sufferers in 25 years. Menkes, which affects only boys, causes an abnormally low level of copper in the body which affects brain development.Nine-months-old Benjamin's parents, Mark and Amanda are trying to raise money for staff at the Royal Manchester Children's Hospital and Birch Hill Hospital who have worked tirelessly to help him.Amanda, 29, said: "It won't help Benjamin but we would like to help other children. The doctors and nurses have worked wonders with him. It is our way of thanking them."Amanda, who suffered the trauma of a still-born child before she fell pregnant with Benjamin, said: "He is happy and in his own way he is developing but we do not expect him to live past the age of two. It is like living with a time bomb in a sense but we really do get on with things. We make the most of every second with him."Benjamin was diagnosed when he was three-months-old and Mark, 33 and Amanda, 29, from Townley Road, Milnrow, were told the devastating news that there is no cure. He has grown but the development of his senses and co-ordination is very poor. He cannot sit up or speak and he cannot focus his eyes and suffers fits.Menkes is passed in the genes from mother to son. Amanda is having tests to confirm she is a carrier. If she is it is likely that any more male children she has in the future will also be born with the illness.Doctor Rupert Smith, consultant paediatrician at Birch Hill Hospital, said: "In 20 years I have seen two cases of Menkes and most of my colleagues never see it. Benjamin is a lovely little boy and his family are excellent. Staff at the hospital have been amazed at the way they have handled the news that they must prepare for their son's death."
