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 he suffered critical heart failure, and thanks to the hard work of the medics and nurses in A&E and then intensive care he survived the night we'd been told he wouldn't and 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 having welcomed Gabriel, Sebastian's brother into our lives. But our lives had also become very medicalised, with multiple weekly blood tests, injections, interventions necessary to care for Sebastian and 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 aged two and a half 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. Then 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 be able to repay them for their amazing work, but I will do what I can.