Eight employees from IT software development company, KFA Connect, based in Ringwood, Southampton, took part in our Run 4 Respite event in March. This involved each employee running, jogging or walking 105 miles with the aim of raising £105 each, which could fund 5 hours of respite care at the hospices.
We had some wet, windy and muddy days in March, but that didn’t stop the team – they covered 1,086 miles between them; 246 miles more than was actually needed for the challenge and raised over £2,000 for our charity.
One member of the team had a special motivation for taking part in the event – this was Naomi House dad, Joe.
Joe and his family were supported by Naomi House on their darkest of days when their little boy, Sebastian, sadly passed away at just two and a half years old. We spoke to Joe about his son, family and experience at our hospices:
“When my eldest child, Sebastian 'Bod' Vavasour was born, he was a happy little baby and I was a typical shell-shocked, doting, proud father, very much in love with him.
“At 18 days old, Sebastian suffered critical heart failure, and thanks to the hard work of the medics and nurses in A&E and intensive care, he survived the night. We'd been told he wouldn't but he appeared to make a miraculous recovery.
“By the time he was a year old, we realised that Sebastian wasn't making the physical progress that would have been expected of him, and he was diagnosed with Barth Syndrome, an incredibly rare, life-limiting, genetic condition.
“When we moved as a family to Hampshire, we were a happy unit, finding our way, and welcoming Gabriel, Sebastian's brother, into our lives. But our lives had also become very medicalised, with multiple weekly blood tests, injections and interventions necessary to care for Sebastian. To give him the best life possible, we were put into contact with Naomi House, who would be able to provide respite care as Sebastian grew older; for short periods of time in a fantastic environment.
“Sebastian didn't reach his third birthday and died tragically at just two and a half years old in December 2013 in Great Ormond Street Hospital, whilst waiting for a heart transplant.
“At the darkest point of our lives, Naomi House arranged the collection of Sebastian from the hospital in London and brought him home for the last time. The staff there took us to the Butterfly bereavement suite at the hospice where Sebastian could be looked after before the funeral, and where we were given compassionate and practical help over the next week.
They offered warmth and light at this dark time.
“Sebastian is memorialised alongside numerous other lives lost early in the beautiful garden of remembrance at Naomi House, and we can visit whenever we want.
“Everything Naomi House offered to us was given without strings. They and many hospices rely on the donations of people like you and me. I won't ever be able to repay them for their amazing work, but I will do what I can.
Naomi House deserves your support. I don't need to tell you that. But they are why I'm doing this challenge. Our lives are full of numbers, speed, height, distance, salary, audience, age, often bigger is better, more impressive. My son's life wasn't so impressive in those terms, he was slow, short, and his whole life was 901 days. But he had a great life, filled with love, smiles, happiness (no numbers for those) from start to end. Naomi House made the unimaginable, tolerable, they gave us care when we needed it, without strings.
We’d like to personally thank Joe for bravely sharing his heart breaking, inspirational story. And thank you to Joe and the team at KFA Connect for running for respite this March and raising an incredible total for our hospices – we are so incredibly grateful for your support.