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Our Story

When my boy Mo was three months old he had a life-threatening episode that initially went undiagnosed. It appeared to have been a one-off, but sadly it happened again when we were in Spain a couple of months later. We were lucky enough to get a diagnosis there:

Food Protein Induced Enterocolitis Syndrome (FPIES) is the most severe type of delayed food allergy and most commonly affects babies and young children. Infants with FPIES typically vomit profusely 30 minutes- 6 hours after eating the problem food and may become lethargic or unconscious, develop low blood pressure, become extremely unwell and experience symptoms of shock, requiring hospitalisation.

This is a very rare condition, and due to the delayed nature of its onset, is very hard to diagnose. It's also possible to react like this to almost any food, and there's currently no way to test for it beyond trial and error. 

As such we've had to trial Mo on one food at a time since he started weaning. For the most high-risk foods (rice, wheat, soy, barley, oats, chicken, fish, banana, peas, sweet potato etc) we have to sit outside A&E for 8 hours giving him said food for breakfast and then lunch, and then go home at the end of the day if he's not reacted. So far he has only reacted to dairy, so fingers crossed that's all it is - we're finding out more with every food trial.

The Charity - FPIES UK

FPIES UK are a very small charity who are doing brilliant work to support and educate parents (and doctors, most of whom have not heard of FPIES) as to how to cope with the condition. They are doing great things with few resources, and as you can probably imagine, we would love to help them reach and support more people, and perhaps even contribute to reliable and less risky/worrisome method of testing and diagnosis so other families don't have to go through what we have. 

The Challenge

I have started training for the biggest run of my life! On May day bank holiday weekend 2020 I am going to run the full length of Hadrian's Wall in Northumberland, from the Irish Sea at Bowness-on-Solway to the North Sea at Wallsend in Newcastle. This is an 84 mile (135k) trail run with over 2100m of ascent which I'll be doing over three days. That's 28 miles - or just over a marathon a day, three days in a row.

I'm incredibly lucky that my brilliant friend Ian Drysdale will be joining me for it, and Shaun Dixon (@letsgetrunning) will be training us for free.

If you think this is a worthy challenge, or even if you think it's pathetically short, please do donate to support FPIES UK. We as a family would have been lost without their support and there are many others like us out there. 

Thanks so much! 

Tom, Aimee and little Mo

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