Dad runs five marathons in 50 hours to help raise £1m for girl with rare brain disease

Aggie is one of only 200 children in the world with rare brain condition H-ABC – and now former soldier Darren Hardy is helping to raise £1m for her treatment

Today, on April 9, when many of us will be lying around cradling bellies overstuffed with Easter eggs and thinking about getting back in the gym after the bank holiday weekend, former soldier turned extreme sports endurance champion Darren Hardy will be setting off on a 50-hour run.

In that time, he’ll be racking up more than 210km – equivalent to five marathons – without stopping.

If he makes it back to Poole within the 50-hour challenge, Hardy says he’s just going to keep on running – because he’s not doing this for glory or to set a new personal best – he’s doing it to save the life of a 12-year-old girl he met last weekend.

How can a 50-hour run help save Aggie?

Hardy, a 35-year-old former soldier and father of two young daughters, only recently heard about a British schoolgirl, Aggie Candy-Waters from Cirencester, who was diagnosed with the world’s rarest disease, H-ABC, six years ago. Last week he drove to meet Aggie and her family.

Aggie meeting Darren Hardy for the first time in March 2021 after he was touched by her story

Now 12, Aggie who used to run, play and sing is permanently in a wheelchair and is rapidly losing her fine motor skills – meaning she is fed, dressed and carried by her parents and has lost her ability to speak.

There are 200 children in the world like Aggie and most are diagnosed around the age of three or four, when their parents notice that their development is slower than other children of their age.

Hardy says: ‘My daughters are two and four and enjoying all the things I know Aggie used to. I can’t imagine the absolute heartbreak that Aggie’s parents will have gone through learning their beautiful, happy girl was going to decline in this way.’

Aggie with her family, brother Finn and parents Ali and Rich

He continued: ‘I immediately got in touch and asked what I could do. It was then that I learned that we could race against time to reach their £1m target to get new life-saving gene therapy developed at the Children’s Hospital of Philadelphia for not only Aggie, but for two more young children called Frankie, age five and Sofia, nine.

‘This was when I came up with the idea of running five marathons in 50 hours, with every penny going towards gene therapy treatment for children with H-ABC that is in development at the Children’s Hospital of Philadelphia.’

This isn’t the first time that Hardy has put his extreme endurance skills – gleaned in the army – towards fundraising for charity. Sport and training became a big part of Darren’s life as part of his recovery after he was medically discharged with PTSD after 15 years in the army, seeing him become double gold medallist and Warrior Games record breaker. Now, he takes on extreme endurance challenges to push himself physically and mentally while helping to fund causes he believes in. Over the lockdown, Darren raised £16,000 for Help For Heroes and £8,000 for Great Ormond Street Hospital through various extreme challenges, including running 112 miles over 37.5 hours on his treadmill at home.

Aggie as a baby. Her mother Ali says she knew something was wrong when Aggie was slow to develop her motor skills but it was years before they finally got a diagnosis

‘We are overwhelmed that Darren, a total stranger, has got in touch to help us in this unbelievably generous way,’ says Ali Candy-Waters, Aggie’s mum. ‘You have no idea what every act of kindness does for our hope and happiness. H-ABC is the world’s rarest brain disease. People simply haven’t heard of it, so in our darkest moments we wonder if we can ever get to our £1m target in time. Then we hear from someone like Darren and we feel like there could be a chance.’

During his ‘5 marathons in 50 hours’ Darren will run continuously, with just short rest breaks. He will carry a backpack with energy foods and water. His route will see him leaving Poole, where he lives, at 8am on Friday 9 April and running south along the Jurassic Coast as far as Chesil Beach in Weymouth, before turning back to Poole.

Aggie and her family will be heading to Poole to support Darren as he crosses the finishing line back on the beach near South Haven Point. Onlookers are welcome to join them, Darren says.

Darren, who has battled with depression over the years and uses extreme sports challenges to keep him positive and focused while helping charities and advancing medical research admits this is his most gruelling challenge to date, but it has transformed his own mental health and happiness. ‘I’m preparing for the run by getting up at 4:30am every day at home and hitting my treadmill, as well as running outdoors,’ explained Darren. ‘I’m calling on my sleep deprivation training from the army to help me keep awake.’

What exactly is H-ABC?

In Aggie’s case, it all started in 2012. Aggie seemed to be completely normal, except her parents, Rich and Ali, had noticed she was falling over more than most children her age and she couldn’t really kick a ball, work a tricycle or easily complete a task that required fine motor skills.

‘Aggie was the happiest, most content baby,’ Ali explains. ‘But she didn’t sit independently until she was six months old, and then she was wobbly.’ The appointment led to countless tests, driven by Ali’s maternal concern that something wasn’t right. At every stage, doctors dismissed Aggie’s symptoms as minor coordination problems or hypermobility – but in 2015, the family’s persistence resulted in Aggie’s diagnosis with H-ABC, a rare degenerative disease which at the time had only 44 known cases globally.

Upon her first visit to the doctors, the verdict was that she could be hypermobile. ‘We thought “great, she’ll be a dancer”,’ Ali says. ‘But then after yet more falls, we sought out a paediatrician who decided to do an MRI scan and that’s when the results came back, that there was white matter on her brain. Worryingly, no one could tell us what this actually meant.’

Blood tests and biopsies and even video recordings to study Aggie’s motor skills followed. Then Ali and Rich went to Oxford to meet a neurologist. ‘He was amazing,’ Ali recalls. ‘He gave us hours of his time for our first appointment and in June 2015 he diagnosed Aggie with Tubb4a / H-ABC, at a time when there were only 44 known cases in the world. It was such an unknown disease, it had only just been given a name.

‘We were told Aggie had a rare, degenerative and life-shortening neurological disease for which there was no cure. Hearing this was earth-shattering. I can’t even begin to describe it to you, it just blew us out of the water.’

‘Ever since that day, powerless, we have watched our spirited Agatha, who is now 12, grow in humility, resilience and humour while her body has gradually been packing up on her,’ explains Aggie’s father Rich.

‘The muscles in her legs, once chunky and healthy, have now wasted away. She is now wheelchair-bound. She has lost her fine motor skills that enabled her to feed herself. She can’t verbally express herself.’

For years after the diagnosis, Ali explains that neither she nor Rich could bear to do any research. ‘I couldn’t search on social media and see what might lie ahead of us. I had to let my sister do all of this for me. It was my sister who found the doctors in America we’re now in touch with and the small charity called H-ABC Foundation UK, set up by Amy Sheridan Hill and Doctor Michelle Teng – a doctor of genetics – who are mothers of Frankie, 5 and Sofia 9, two British children also living with H-ABC.

Through Amy, Michelle and the doctors they have connected with in America, families living with H-ABC have learnt that promising research is starting to emerge from the Children’s Hospital of Philadelphia (CHOP), led by Dr Adeline Vanderver. ‘Cellular-level research of the disease is already complete,’ explains Rich. New gene therapy can slow the disease down in mice, so the next step is to raise the first £1m so that human trials can begin that could save our children.’

This is where Darren’s 5 in 50 challenge is aiming to help make an impact.

‘Aggie is at the stage of not talking,’ says Darren. ‘But when I when I met her last week, her smile just lit the room up. And she doesn’t want to you to know that anything’s wrong, she’s so independent and so inspirational. Meeting her has given me more of a drive to do this. I think her family are the most amazing four people I’ve ever met. I had a conversation with my wife to say you know, if I come in at like 44 hours, for example, I’m just going to keep running for Aggie.’

Darren is running from Poole to Weymouth along the Jurassic Coastline on Friday 9 April and back again, returning home on the morning of Sunday 10 April. You can sponsor him here.

Celebrities including boxer Tyson Fury and Ben Fogle have been posting messages of support. Follow Darren’s journey on Twitter or Instagram.

Hear Darren Hardy talking about his 5 in 50 challenge on the Healthy Beast podcast.

Follow Darren’s progress live here:


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