Ann and Michael Wilde's story
While most of us are able to make the decision whether or not to donate our organs, sometimes this difficult choice has to be left to the family.
Michael Wilde, who was born with Cornelia de Lange Syndrome, a rare genetic condition which meant he was unable to speak and had special needs, died at the age of 31 having choked on food.
His family, who had never been able to discuss donation with him because of his condition, felt certain that he would have wished to save life if he could and made the difficult decision to donate Mike’s liver, along with his kidneys, heart valves and corneas. Because of his condition, ultimately it was only Mike’s liver that could be used in a transplant.
“Mike loved life,” says his mother Ann, who founded the Cornelia de Lange Foundation in the UK, “and was a great character with a wonderful sense of humour. Just before Michael’s funeral we heard that his liver had saved the life of a 38-year old man and we were able to announce this. When you are going through such a terrible time, it is probably the only way to get something positive."
“It seems to us that patients have a very rough time, and are very ill when the transplants take place. It also seems that recovery can begin very quickly following the transplant. “
Ann adds: “I have given two talks to staff from the A & E department at Frenchay Hospital in Bristol and have tried to focus on the importance of asking families if they would consider donation. Before the talks the percentage of families asked was zero - 12%.....now it is 90-100%, and the donation rate has improved in all areas."
"I have tried to explain that the donor families can benefit as well as the recipient. I often think of the man who received Michaels liver, and wonder if he is ok. I don't think of it as 'part of Mike living on', I just think somebody might be alive and well because of Mike.”
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