TCS London Marathon 2024

I will be running my 4th London Marathon on 21st April 2024 for DEBRA, this is in honour of Max William Boyle 24.07.2006 - 01.03.2007, the late son of my lifelong friend Matt Boyle.

The charity DEBRA are still as relevant to me now as they were 18 years ago. Please help me raise much needed funds for this very important charity and donate where you can.

If you care to read on, one will appreciate why I am still as passionate now all these years later about helping this wonderful charity continue their amazing work………….

Max was taken far too soon by this horrendous genetic disease after a 7 month battle with the worst form of epidermolysis bullosa (EB), Herlitz Junctional. Most children born with this form of EB do not survive beyond infancy. This would have been Max's 18th year, a milestone year to remember for any teenager and we will always wonder what would have been. Max's memory lives on, and we will never forget him nor all the other EB sufferers and families that have and are currently enduring the worst disease you have never heard of!

Having seen the impact of EB first hand, I can honestly say this is one of the most brutal and debilitating diseases a human being could suffer. To know that one of your vital organs (your skin) is not working is almost unthinkable to most people. To know that sufferers' skin will blister at the slightest of touches, the pain and suffering to follow whilst those blisters get angry, and the dressings applied to avoid infection is an unimaginable daily battle for all those affected by EB. A parents instinct is to hug their child, the most natural of actions, especially with a new born baby. Imagine that action being one of the most dangerous actions for your child because it would result in horrendous blisters. This was the reality for Max and his parents. They could not hold him tightly despite their natural urge to.

I witnessed Max's condition deteriorate on a weekly basis during his short life, he was covered head to toe in blisters which all required dressings and these needed changing twice a day which was a mummifying 2-3 hour task. I'm getting emotional typing this as it really was one of my worst experiences seeing what poor Max went through. No family should ever have to endure this on their own. Mercifully, the DEBRA nurses were always on hand to help with Max and on call 24 / 7 (ironically Max's birthdate). Without DEBRA I honestly don't know how Max's parents would have coped, the truth is, they struggled to cope, they merely survived through this ordeal until the bitter end. No parents should outlive their child, but this was the timebomb awaiting Max and his parents. Unfortunately, that day came, along with the farewell soon after. The hardest day of my life, you cannot put it into words, for Max's parents the grief was unbearable to lose their first child in such a cruel way. DEBRA were there supporting all the way.

You would think that is where the EB story would end for Max's parents, unfortunately it only became more complex. Naturally, in time, they tried again for second child and knowing that between them they carried this rare genetic disease. They were offered support from DEBRA in terms of early stage testing during pregnancy. The odds were as low as 25% for their next child being born with EB, although, testing could only occur following several weeks of pregnancy which carried its own inherent risks. Devastatingly, Max's parents had the heartbreak of positive EB tests no fewer than 10 times which resulted in extremely difficult decisions to be made each time, with DEBRA by their side.

I am pleased to say that Max has two healthy sisters aged 14 and 9, both are doing well and much aware of their big brother’s bravery. Sadly, Max’s parents are no longer together. Unfortunately, I am told that this is common occurrence amongst parents who have been through the EB journey. The stresses and strains eventually take their toll on the strongest of relationships. EB really does cut at the heart of family, DEBRA recognise this and now provide respite care in many forms including providing holiday homes for families to escape from the day to day pressures of EB.

Seeing the catastrophic effects of EB and the invaluable support DEBRA bring, means that this charity has always held a place in my heart. This charity relies entirely on donations to keep going. DEBRA’s vital work is often the only support EB families receive, this and Max has been the driver for me to try and be effective by helping raise much needed funds to keep DEBRA operational. This has seen me complete x3 London Marathons, the National 3 Peaks Challenge and attend numerous DEBRA fundraising events over the last 18 years.

We can always do more, therefore I am running a 4th London Marathon to help raise funds for DEBRA to help reach their ultimate goal which is to find a cure for EB.

My legs are not getting any younger (48), therefore your support and donations would mean a great deal to me however large or small.

In the photo is Max’s eldest sister with an earlier marathon medal, I plan to give this year’s medal to Max’s younger sister, I cannot wait to present it her.

Thank you.

In loving memory of Max Boyle.