ABOUT US

THE JON SHAW FOUNDATION

WHO WE ARE:

We are a group of friends and family of Jon, who are determined to help young people with epilepsy and others who have lost siblings in honour of Jon’s memory. We know only too well that few people have heard of SUDEP and it is part of our mission to inform everyone of the risks in epilepsy. We also know from personal experience how difficult it is to lose a sibling. During the first few months of Jon’ s death there was a lot of support for me as a mum but his brothers were generally overlooked. Speaking to other bereaved families I have discovered that this seems to be a recurring theme, so it is important for us to change this if we can.

OUR GOALS:

  • Promote and support the mental and physical health of young people with epilepsy
  • Support the mental health of bereaved siblings
  • Promote awareness all aspects of SUDEP among the general public.
  • The Charity will be governed by a number of Trustees and supported by a team of volunteers

WHAT WE AIM TO DO…

We will offer financial assistance for equipment and services not normally available through the NHS. For example Monitors and alarms, anti suffocation pillows and many more. Provide funding towards leisure or sporting activities/clubs, and signpost and coordinate access to play/animal therapy, forest schools. We will also organise social events so that bereaved siblings will have the opportunity to talk to others who will understand. Continue to raise awareness of SUDEP by setting up information points in local businesses, in addition to sharing information with organisations working with young people. We will continue to promote awareness at all our fundraising events.

How will we do this?

Obviously this all comes at cost but we will do all we can to help those who need us and bring the changes needed to make everyone aware of the risks through fundraising events and donations.

JON’S STORY

Jon always lived life to the full, he loved rugby, he 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 and 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, 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 at least 1 in 1000 young people with epilepsy fall victim to SUDEP every 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.