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

    “Thank you very much for Chris' card. I cannot believe he is 18 and am so proud of the lovely young man he has become, overcoming the many challenges we have faced over the years, especially in the first 4 to 5 years. Thank you Little hearts matter for always being there.”

    Thank you to Chris and mum Philippa for sharing this fantastic news with us, we hope this brings some inspiration to the many families out there who are at the start of their half a heart journey.

    With YOUR help, we can continue to support the amazing young adults living with a single ventricle heart today, just like Chris here. All you need to do spare 30 seconds of your time every day to vote for LHM in Persimmon’s ‘Building Futures’ initiative.

    They don’t ask for any details, you simply click our logo on this page;

    Please share x
    ... See MoreSee Less

    13 hours ago  ·  

    View on Facebook

    So pleased to see Amelia here, DILV, enjoying some cycling along with her sister Evie…

    “We’ve been doing a lot of cycling this week as both girls have grown in confidence. I’m amazed at Amelia’s stamina on the bike, doing much more exercise than she’s ever done. This is the girl that needs a buggy to get home from school (in normal life). She’s found a sport that she can comfortably do. She says she feels free when she’s cycling. That makes me happy and sad at the same time ❤ “Cycling makes me feel free, happy and like nothing is in my way””

    Riding a bike is great exercise for children, teenagers and adults with half a working heart. It helps get you from A to B but is also is supported exercise for the lower body and therefore provides good support for blood returning to the lungs. There are many incentives to help get you on a bike, at the moment.

    Learn more by jumping to our ‘get fit for winter’ resource here:
    ... See MoreSee Less

    19 hours ago  ·  

    View on Facebook