At sounddelivery we champion stories that need to be told, stories that challenge prejudice and disadvantage, and have the power to change the world around us. We do this through digital storytelling training with charities and individuals with lived experience and through our events which aim to build capacity within the sector and encourage and champion authentic storytelling. Being the Story is a platform for ordinary people with extraordinary stories to share their experiences widely. Our Being the Story events give a stage to individuals who are a voice for others covering a myriad of subjects. Nicola Pietrzyk’s son was diagnosed with Congenital Nephrotic Syndrome at five weeks, she is using her story to raise awareness of the challenges and triumphs of finding an organ donor.
Nicola Pietrzyk is a 37-year-old mother of three boys from Leicester. Her middle son Matthew was diagnosed with Congenital Nephrotic Syndrome at just five weeks of age. The only chance of a normal life for Matthew was a kidney transplant. In 2008 Nicola underwent surgery to donate her own kidney, but sadly the operation was unsuccessful. It was in 2013 when she discovered Matthews chances of actually finding a donor were bleak that she decided to start a campaign using social media in the hope of finding a living donor. Matthew had been spending 12 hours a day on dialysis and had been waiting years for a possible donor on the NHS waiting list and so she launched ‘A Million Likes for a Kidney for Matthew’ to find a donor herself.
We first heard Matthew’s Story on ‘Inside Birmingham Children’s Hospital’ a documentary by TV production company Dragonfly TV. We invited Nicola to share her story at our annual digital storytelling training day, the Social Media Exchange 2017. Nicola shared her personal experiences with a room of over 170 charity staff and expert citizens in this powerful Being the Story talk.
Since Nicola took part in the Social Media Exchange she has been featured on Radio 4’s Lesley Curwen programme which looked at organ donation as increasing amounts of people turn to the internet and social media to try and find their donors. She told Lesley she is certain that if she hadn’t launched her social media campaign ‘A Million Likes for a Kidney for Matthew’, a stranger would never have offered her son a new kidney, potentially saving his life.
If Nicola and Matthew’s story has inspired you to register as a donor, you can find more information here: https://www.organdonation.nhs.uk/
Telling a great story can change attitudes, challenge stigma and promote social change. Being the Story aims to do just that, find out more about our storytelling platform and please support Being the Story by subscribing to our YouTube channel to hear more powerful firsthand stories.
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