We are honoured to share this heartfelt blog written by Jordan, who has been fundraising in memory of his cousin’s little boy, Coby. Fundraisers like Jordan play a crucial role in helping us continue our work — supporting patients and families affected by complex lymphatic anomalies, educating the public and medical professionals, and funding essential research.
Thank you, Jordan, for your incredible support and for sharing your story with us. Here’s Jordan’s story;
Hi everyone,
I’m Jordan, and I wanted to share a bit about why I recently ran the Sheffield Half Marathon – not just as a personal challenge, but in memory of someone special to me.
This run was for my cousin’s little boy, Coby, who heartbreakingly passed away in 2022 at just 9 years old. Coby was diagnosed with Gorham-Stout Disease when he was only 3 – it’s an incredibly rare and cruel bone condition where your bones literally disappear. Only a few hundred cases have ever been reported worldwide. There’s no known cause, no cure, and very little research – which is exactly why I’m doing what I can to raise awareness and funds for the LGDA.
Coby was a little warrior – constantly in and out of hospital, having scans, tests, surgeries, and dealing with more pain than most of us could imagine. But he never let it get him down. He was full of life, always smiling, and just the happiest little lad. Everyone who met him adored him. We miss him more than I could ever say, and though nothing will bring him back, I want to do whatever I can to help others like him – and to keep his memory alive.
So, onto the challenge…
The Sheffield Half Marathon isn’t exactly a walk in the park – it’s a proper hilly route, and to make things a bit more interesting (and let’s be honest, a bit more bonkers), I decided to run it in fancy dress. Not just any outfit though – Coby had a Kermit the Frog teddy he carried everywhere, so I thought it only fitting that I do the run as Kermit himself.
To add to that, I strapped on a 9kg weight, just to up the difficulty level and reflect – in a small way – the heavy load kids like Coby carry every day with conditions like this.
I set my fundraising target at £500, thinking I’d be lucky to hit it. But thanks to the generosity of so many amazing people, we didn’t just hit it – we smashed it. We raised a brilliant £1,420 for the LGDA. Honestly, I was blown away. The support meant the absolute world – not just to me, but to our whole family.
This wasn’t my first fundraising event – I ran my first full marathon for the LGDA back in 2022 and raised £1,500 then. It’s become a bit of a mission for me now. I’m determined to keep doing what I can to raise awareness for these rare diseases that most people have never even heard of until it affects someone they love.
The Sheffield run was tougher than I expected (running with 9kg on your back, in a hot costume, up hills... yeah, not easy). But it’s not meant to be. Coby fought every day of his life – so a bit of pain and sweat for a few hours is the least I can do in his honour.
I’m already thinking about what challenge to take on next – maybe another marathon, maybe something even madder. But whatever it is, it’ll be for Coby, and for the LGDA.
Thanks so much to everyone who supported me – whether you donated, shared the page, or just sent a message of encouragement. It really does mean everything.
If you fancy a look at the fundraising page or want to donate, here’s the link:
justgiving.com/page/kermitsrunningupringinglow
Until the next challenge...
– Jordan
Do you want more ideas for fundraising? Email us for our fundraising Guidebook – info@lgdalliance.org
Other links and resources:
Visit LGDA's JustGiving page or Learn more about JustGiving
Ways to Donation - Learn about fundraising options.
