Meet civil servant and endurance athlete Darren Clawson. Together with his fundraising teammates — who compete in ultra marathons and endurance challenges all around the world — Darren is taking on the extraordinary challenge of rowing the full length of the Amazon to raise money for Great Ormond Street Hospital (GOSH) children’s charity. 

Darren has experienced first-hand the quality of care that the London based hospital provides to children with rare and complex health conditions. Its dedicated staff, made up of world-class doctors, nurses and medical experts, played a pivotal role in his life when his son Hadley became seriously ill at the age of 18 months old, and required life-saving treatment.

Here, Darren shares a moving account of his family’s experiences with GOSH, and why he’s supporting the building of its new Children’s Cancer Centre through endurance fundraising initiatives that push boundaries in inspiring ways.

Darren’s story — in his own words

My son Hadley became seriously ill at 18 months old. He was just walking across the lounge in our home on Christmas Eve to collect a toy from my wife, when he suddenly collapsed in a massive seizure.

He was moved into the local hospital, but for the next seven days his condition just got worse and worse. He had a single seizure on Christmas Eve, but then it was ten on Christmas Day, 15 on Boxing Day, and so on. After a week of his seizures getting increasingly frequent — to the point that the doctors were monitoring moments of the day when he wasn’t having a seizure — he was transferred to Great Ormond Street Hospital.

He was in Great Ormond Street Hospital for nearly three months, where he was continually getting worse, until he was having literally hundreds of seizures a day. 

Watch Darren’s short video where he shares his story.

One day, in mid March, we were in a room with some of the doctors and they were telling us to prepare for the worst; that it was unlikely Hadley would make it to the end of the month. 

They told us that because of the tens of thousands of seizures he was having, it wouldn’t be one single thing that would kill him; he’d just reached his “endurance limits” — that was the term they used — and that no one can go on like that. 

Thankfully, because Great Ormond Street are Great Ormond Street, they managed to access some treatments that were a bit left-field; got hold of drugs that were unlicensed, and were able to stabilise him. So, instead of him dying by the end of the month, in another two or so months, we were walking out the doors of the hospital. 

“He’s just reached his endurance limits”

As I was leaving the hospital I decided I would do whatever I could to pay the hospital back for everything they’d done for us. I said to the doctor as we were leaving, ‘I am going to raise every penny it’s taken for you to look after him, so that it doesn’t affect your ability to do that for families in the future.’ 

I had no idea at the time how much that was(!), but we estimated it was somewhere in the region of £250,000. So, I spent the next 15 years doing ultra marathons and ultra endurance events around the world, trying to keep that promise. 

The very first event that we signed up for, we had to come up with a team name. I had that phrase kicking around in my head — the sentence that was said to me in the hospital — that Hadley had just reached his ‘endurance limits’. It was probably the worst thing anyone has ever said to me. We took that and used that as our team name, and we’ve had it ever since.

Fortunately, we did achieve my promise of raising that money, when we stepped off the boat in Hawaii (for an event which took them across the mid Pacific, from California to Hawaii, in 43 days). Although it took me about 10 years longer than I planned!

But as my teammate joked at the time, we hadn’t factored in inflation! So, we’re keeping going. 

 

On gratitude and Great Ormond Street 

Hadley’s had lots of challenges since; he’s still profoundly disabled because of all the seizures he had, and needs 24 hour care. But he’s got a life; he’s happy and he’s got a loving family around him. So, we’ve got a lot to be grateful for. We’re extremely fortunate to still have him. And actually, what’s come from it — the fundraising; the adventures around the world, the wonderful people we’ve met, the incredible places we’ve been — has all been a massive positive in an otherwise quite negative story. 

Hadley (pictured with his sister) continues to require round-the-clock care.

In terms of my experience of Great Ormond Street; the staff; the doctors and nurses, they are just sensational. It really is a very different proposition to every other hospital I’ve ever been into.

The Great Ormond Street Hospital (GOSH) Charity

GOSH is one of the oldest children’s hospitals in the world, and the charity has a long history of supporting the hospital’s pioneering work and innovative research.

This research focuses on developing new treatments and cures for some of the most complex and rare childhood diseases, which often has global implications, benefiting children worldwide.

Fundraising initiatives like Endurance Limits’ Amazon Row, enable the hospital to continue delivering breakthrough therapies and ultimately saving children’s lives. 

The money raised through the Amazon expedition will go towards the building of a new Children’s Cancer Centre, a facility that will transform cancer care and help GOSH treat and care for a larger number of children.

According to GOSH Chief Executive Matt Shaw, “the Children’s Cancer Centre will mean children with rare and complex cancer receive care in the best possible environment, making it easier for them to be able to play, continue with school and participate in normal activities.

It will also enhance the hospital’s ability to research and innovate to “develop new and kinder treatments for cancer”.

A new critical care unit with dedicated family breathing spaces and on-site accommodation, will allow families to stay together at the most challenging of times.

READ: Expedition team to row Amazon for Great Ormond Street Hospital Charity

Support the charity, and Darren’s extraordinary fundraising initiative, through donations on the Amazon Row Just Giving page.

THE AMAZON ROW: Read about their September 2024 Amazon Row adventure here.