We lost our darling boy Jon Shaw on Father’s Day 16 June 2019, SUDEP snatched him from us. As a family we are broken, but overwhelmed at the number of lives he touched with his big smile and heart of gold. I have been asked to set up a just giving page by the many people who want to do something in his memory, something to help prevent other families and friends suffering the devasting loss we all feel now. Please read Jon’s story and if you would like to help, let me know and I will pass it on to Sudep Action, they may be able to support you with sponsorship forms, T Shirts etc. Thank you on behalf of my angel Jon. (aka Jonno or Russell)
Jon always lived life to the full, he loved rugby  and played through minis, and junior ranks up to Colts and was a fearsome front row player. He enjoyed adventure through Scouts, being rewarded with The Chief Scouts Gold Award; he followed this by joining his local Cadet Force (Navy) and pursued many qualifications in Sailing, Power Boat Handling and SCUBA Diving. He loved being outdoors, particularly on the water.  He was awarded his Duke of Edinburgh Gold after completing many challenges, learning new skills and volunteering in the community. He completed his final expedition after he had been diagnosed with epilepsy; he was determined not to let it interfere with his plans.
He loved helping younger children develop and experience new things. He volunteered with a Tag rugby club, assisting the coach and mentoring those who were struggling. He also spent time working with children who had experienced life trauma and were struggling to engage with anyone. He supported them during Forest School activities, he engaged them with his humour, and relaxed attitude they felt safe an  they felt special, he brought the best out of them.
Jon was friends with everyone, he took people at face value, he didn’t care about differences, he didn’t judge, he enjoyed everyone for who they were. He was full of life, happy, people often referred to him as Smiler, because he was never angry or fed up, and he was always upbeat, he was a champion for those he felt were being treated unfairly, he hated injustice.
Despite the diagnosis Jon was determined to follow his dream of being an engineer, and although he couldn’t join the Royal Navy as he had wanted, through hard work and determination he secured an Engineering Management Apprenticeship within the civil service and a year ago moved to Bristol to start his new independent life. He had successfully completed phase one of his apprenticeship at college and was really excited about moving on to a fabulous career.
On 16 June 2019 (father’s day) I found him in bed,  he had died in his sleep, my gentle giant, my baby, taken from us all in the cruellest of ways with no warning; by Sudden and Unexpected Death in Epilepsy (SUDEp). His seizures were being managed by medication and he had attended specialist clinics on a regular basis, our family knew nothing of a risk of death through epilepsy and yet we have since found out that there are approximately 21 deaths per week, around 6000 per year.
He gave so much to so many people and he was taken just as his future was looking great and he had so much left to do, but he lived his short life well, it was filled with everything he wanted to do, friends, laughs and love.