London Marathon 2022 for TOFS - Justin Merritt

Treat yourself to a pat on the back if you saw this coming!

Yes, it's true - I'm running the London Marathon this October.

The birth of my niece Arielle last November was the first time our family became aware of Oesophageal Atresia (OA) and Tracheo-Oesophageal Fistula (TOF). Which in layman’s terms means the oesophagus isn’t long enough or wide enough – Arielle needed a five-hour operation when she was just a day old so she could breathe and eat. 

The steep learning curve to get up to speed was quite a shock to the system to me and my family – though nothing compared to the anguish my sister, her husband and baby Arielle went through during those first weeks when emergency surgery took the place of the usual family meet ups and swooning over the latest arrival.

And so, in lieu of the most basic 'cheeky uncle' support that I’m not yet able to give my delicate little niece (and her worried parents), the opportunity to raise funds for TOFS is a great way to show my love, support and encouragement - and this is where you come in...

All and any donations you make will not only give me the boost to keep pounding through the 26 miles of London roads but will be gratefully received by TOFS who will use this money to continue helping families in their moments of need.

Those of you who know me, know that I'm a massive music fan and so anyone generous enough to pledge £20 or more can add a song of their choice to the playlist that'll power me through the challenge - no extended chill out mixes please! Just name your track in the donations comments.

Wish me luck and see you on the other side!

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While I face the challenge of a 26 mile run through London, the real challenge is elsewhere. And who better to paint a picture of how Arielle came into this world than her father, and my brother-in-law Iago, so I'll hand you over to him...

part one:

Where to begin?

The anticipation was sky high. The days before her arrival, our world was just a held breath, ready to exhale.

Brief moments come to mind, fleeting highlights... getting to dress up in scrubs for one example...

And then... life quickly turned around. We realised something was not right. Those first 24 hours, we were still blind to everything that would come.

Little did we know, nothing could have prepared us.

part 2:

The first day, from hoping to get discharged and take our baby home, to seeing her in an incubator in the Intensive Care Unit, full of tubes and the damned constant beeping of monitors... unable to hold her, or comfort her.

Doctors, nurses, speaking words which made no sense, even though I’m sure they were in plain English.

A blue light trip on an ambulance for our one day old Arielle, all the way to Brighton, we had to follow after. Still no holding her hand, caressing her face...

Day two, and we are in Brighton Hospital, in the best place for our little one, so Heidi and I keep saying to each other. That afternoon, minutes turn into days, hours into weeks, while we wait to hear that our baby has made it through surgery.

part 3:

The surgeon returns, she is out of surgery, she is well. Arielle is now in a different ward, but still full of tubes. We can gently touch her now, but reality also sets in. This will be our immediate future.

Now comes a period of focus, of attempting to understand. To recap everything from the last three days. What is OA/TOF? What does it mean? When can we go home?

www.tofs.org.uk becomes my bible, I pore over all the articles, and case studies, I read everything multiple times, trying to draw in all the information so I can know how to be ready for our daughter.

I quickly realise the world that has opened before me, and the sheer multitude of possibilities this condition can have on a child. We can do nothing but be around, let her recover from the operation, and learn from her. Indeed, Arielle teaches us that “baby steps” are indeed the way to proceed.

part 4:

This was the biggest realisation through the beginning, until our discharge from hospital a month later – how little we knew. But there was hope. The knowledge that a charity existed to support families like us, the fact that we were not alone, and we could communicate with other families, share stories and ideas.

The promise to do anything for your child, well, it came with extra responsibilities with Arielle, as OA/TOF is a lifelong condition. But we are on a ship with others facing the same fight, and more will jump on board. The TOFS organisation will forever form a part of our, and Arielle’s, lives so we are grateful and humbled by Justin and his effort to fundraise for them.

Me, Arielle and Heidi