Staff and Volunteers

Neil Lightning

Neil was a Maths Teacher and Curriculum Manager for 17 years before becoming a writer and tutor. He first became aware of the charity when he and his wife Jo went to a Patient Education Day in 2015, shortly after their son Will underwent the operation. Having benefited immensely from the charity's support network, Neil jumped at the opportunity to get involved. He volunteered to help Mitrofanoff Support in November 2017 and is responsible for the day-to-day running of the charity.

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Jim and Lynda Kenison

Jim was first diagnosed with bladder cancer in 2008 and after an operation to remove the tumour, both chemo and radio therapy were initially successful.  The cancer returned in 2012 and his bladder was removed and replaced with a new one constructed from a piece of bowel and a Mitrofanoff urinary diversion.  The success of the procedure has meant Jim’s lifestyle has changed very little. Jim works full time for the Wates Group as a planner in the new build residential market.

Jim’s wife, Lynda, was given a huge amount of support and information from members of Mitrofanoff Support, both before and after Jim’s operation.  They both now work with the charity to help with the organisation and offer their support for patient and carers who need it.

Jamie Shannon

Jamie was born with Bladder Epispadias and had a lot of reconstruction surgery as a young child. An artificial sphincter worked for a few years so Jamie was continent but then struggled with emptying his bladder. Jamie had the Mitrofanoff procedure in 1996, this allowed him to live a normal lifestyle. Jamie works as an office administrator and has been within the same company since 2002.

The hardest thing I found about my congenital malformations is my mental health. In 2011 I wanted to see if I could talk to anyone and I found Mitrofanoff Support. Mitrofanoff Support does a great job of bringing people together and holds some of the best events, so people can get together and share stories. I would even say some of them are my best friends. I am much happier now and help at Mitrofanoff Support events.”

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