Organ donation

Andrea - Interview 26

Age at interview: 54

Brief outline: Andrea's brother, Paul, sadly died in 2009 of a rare condition called Wolfram Syndrome, aged 50. She and her father are proud of Paul and 'the gift of life' he gave to two people.

Background: Andrea is a teaching assistant. She is divorced and has an adult child. Ethnic background / nationality' White British.

Audio & video



Andrea’s brother, Paul, sadly died in 2009 of a rare condition called Wolfram Syndrome, aged 50. Paul was born in 1959 and, unfortunately, had poor health most of his life. At the age of 11, he developed diabetes. At the age of 15, he started losing his sight but doctors did not know why, only that it was unrelated to his diabetes. His hearing began to be affected in his 20s and, in 1996, he became extremely ill. In hospital, doctors found out that he had been retaining his urine and his body was flushing out the salts and fluids. Doctors did not why this was happening but feared that Paul would not survive.

Eventually, Paul was diagnosed with Wolfram Syndrome. This is a rare genetic disorder, causing diabetes, problems with the sight and hearing as well as other problems. Later, Paul had to be catheterised to pass urine and was registered blind. He also had problems with his mobility and was unable to walk without support.

In 2008, Paul was admitted to intensive care because he vomited in his sleep and aspirated. He was further debilitated after this event, and was put on a pureed diet. Throughout this time, he was being cared for in a nursing home and also had a lot of family around.

In 2009, Paul aspirated again and was, once more, taken into hospital. On this occasion, sadly, he deteriorated further and looked unlikely to survive. Andrea and their father asked doctors about organ donation. She remembered that Paul had had a donor card but thought he would be too ill to donate any of his organs. The specialist nurse [co-ordinator] told them that he would be able to donate his kidneys and liver. After Paul’s death, the liver was used to further medical research and his kidneys were donated to help improve the quality of life of two recipients – a 43-year-old man with two sons and a woman in her 50s who needed a second kidney transplant.

Andrea said she and her father gained a lot of comfort hearing from the male recipient, who wrote and told them how much his life had improved since the transplant. They receive regular updates from the specialist nurse, something they value deeply, and are proud of Paul and ‘the gift of life’ he gave to two people.  


Please use the form below to tell us what you think of the site. We’d love to hear about how we’ve helped you, how we could improve or if you have found something that’s broken on the site. We are a small team but will try to reply as quickly as possible.

Please note that we are unable to accept article submissions or offer medical advice. If you are affected by any of the issues covered on this website and need to talk to someone in confidence, please contact The Samaritans or your Doctor.

Make a Donation to

Find out more about how you can help us.

Send to a friend

Simply fill out this form and we'll send them an email