September 20, 2023
There didn't seem to much option really? We were now all back at home as a family and apart from a plaster on Allegra's chest there was little physical reminder of what had just happened but I knew then that I was going to "do something" and try and make a difference to the endless stream of families that go through those doors to Paediatric Intensive Care.
Let's roll back a few months, I am in the middle of the Sahara Desert and my phone rings, it is Laura (my wife). We are expecting the results of a chromosome test for our unborn child, but they are not expected for a few more days, I answer assuming something else is on her mind. "It's ok, we have the all clear"... I fall to my knees, James Street who is running with me knows I am expecting these test results and just looks at me, tears are streaming down my face and he looks terrified. I manage to get the words "she's fine" out and he realises that it is utter relief I am feeling. We are in the middle of the Marathon des Sables, about 30km into the long day run of 86km when the call came in. I can't speak for about 10km, we run along the sand dunes in silence... one of many very emotional moments in the summer of 2017.
Allegra was diagnosed with a Right Aortic Arch at her 20 week scan, not that uncommon but often linked to complex chromosome defects. Luckily we did not have these and we discussed with the doctors about the "plumbing problem" as if it was just a few pipes. As time went on the diagnosis became more complex and it was clear that our baby was going to need surgery. If I'm honest I thought this was going to be easy, I would not be that attached to a baby after a few days, I would be "typically male with my emotions" and provide the support that I knew Laura would need.
How wrong was I? I crumbled.
Our time in hospital was short, intense, incredibly emotional and an experience that will last a lifetime. But throughout we felt lucky, whilst Allegra's reaction was severe there was no underlying issue and our time in hospital was quite short. However I was so affected by my time that I knew that I had to do something. Olivier Ghez our surgeon and I were talking and we talked about what had happened to Allegra and the research he was doing, that was the answer, it was the cause that I had been searching for. I felt such a strong connection to the PICU at the Royal Brompton and wanted to make a real difference. After a short bit of research I realised I was a little old to retrain as a surgeon and so had to find another way....
I wanted to do something that was challenging for me but at the same time inclusive for all. It had to be local, ideally close to the hospital and something that my family and I could embrace - that really only left running.
So the idea of the long run, with shorter loops for others to join in with was born. Laura imposed a limit (probably sensibly....) of 100km. That's it, that's why I'm doing it and that's why I want you all to help.
Thank you,
Ben