Alex Webb 21 (HLHS) – Walking Challenge

Although I was born with a heart condition (HLHS), I have always thought I was ‘normal’ because I went to a ‘normal’ school, eat ‘normally’, play ‘normally’ and have lived, a ‘normal’ life so far. If you’ve not known anything else, it can be easy to forget that you take medications daily, always have and always will. It can be easy to forget that all the jobs you really want to do in life (military, fire brigade etc.) are out of the question because you’d fail the medical at the first hurdle. It can be easy to forget you’ve had several open-heart surgeries, and when I was younger it was strange for me to see people who didn’t have scars on their chests. Travelling to London for regular Consultant appointments and check-ups, fitness tests are just part of my ‘normal’ life. Getting out of breath on a dog walk was normal.

However I always felt like I hadn’t challenged myself enough, and was almost wrapped in cotton wool from an early age, with doctors telling me what I COULD’NT do. So I decided with a friend to walk 100 miles for Little Hearts Matter, across France and Belgium. On 18th June we set off which was to take us from Boulogne Sur Mer to Ghent and cover a multitude of terrains and total 100 miles. My mum kept saying what a feat this would be for someone who was 100% healthy, and impossible (& risky) for someone with half a heart, but I brushed off her worries as ridiculous…


On the first day we walked a Total of 28 miles for 13 hours straight, through steep valleys and up ridges around Boulogne. It was clear to me and my friend, Ben, that after the first day, 100 miles might be a bit of a step too far for me as I was clearly struggling and I wouldn’t be able to keep up this pace. We decided, much to my disappointment, to change our goalposts, and try to achieve 100 km, ending our journey at Roeselare. I wasn’t happy about this, but realised, deep down, that it was probably the best thing to do.

We spent the next four days walking in rural French countryside, with what appeared to be no civilisation for miles, and finally into Belgium taking 33 hours and covering 64 miles (just over 100km) carrying about 15kg of equipment for camping. There were times when I really felt I would never finish, and I was sure I couldn’t do it. Ben gave me great encouragement and support, and made me feel as though the impossible for me was possible. I was conscious I didn’t want to hold him back, so I persevered and tried to drag my ‘dead’ legs in front of one another for those last few miles. At the time I didn’t consider the extreme fatigue and pain to be connected to my heart at all, I assumed everyone would feel like this doing the same adventure. I cannot tell you how pleased I was to finally see the station at Roeselare and yes; the best bit of the whole journey was that first pint…

Be social with us - our latest tweets and posts

    Nominations are open for our next Brave Hearts Awards 🏅

    We know that a lot of our young people miss out on awards and trips at school and we feel that they, like every young person should be rewarded for what they learn and how they develop 🙌

    If you know of a young person with a single ventricle heart aged between 8-17 that has achieved and grown, take a look at our list of awards on 👈

    Nominations will close at the end of January 2020 📅
    ... See MoreSee Less

    8 hours ago  ·  

    View on Facebook

    👋 Meet Archie, he is 7 years old and was born with Tricuspid Atresia (TA) a rare congenital heart condition. Archie had his Fontan procedure in September at the University Hospital Southampton, Ocean Ward. The aim of the Fontan procedure is to give a child as much energy as having only half a pumping heart will allow. If surgery has gone to plan the children will gradually recover from the operation and go on to gain far more energy than they had before. He had a longer stay than anticipated, due to a number of complications, but was discharged in October.

    ❤️ “The staff, nurses, doctors, consultants and surgeon were utterly wonderful and we can’t thank them enough. However, it was a consultant anaesthetist, Dr Andy Curry, who stood out in Archie’s mind. His bedside manner, and the relationship of trust that he managed to build up with our very anxious little boy, was astounding to watch. So, on ‘Dress as your Hero Day’ at school, Archie wanted to dress as his hero…”I want to dress as Dr Andy because he helped save my life and he’s my friend”…gulp” – Archie’s mum Charlene.

    😻 We have been blown away by this story. A month after coming home from hospital and Archie is raising a smile, dressing up as his hero and on his way to school. This is one strong boy, as are all of the children in the LHM family.

    🙌 Give this post a share to show your support of Children’s day.

    University Hospital Southampton NHS Foundation Trust
    ... See MoreSee Less

    1 day ago  ·  

    View on Facebook