- Former soldier Darren Hardy will run five marathons in 50 hours non-stop for children with H-ABC
- Darren came up with the challenge after reading about Aggie Candy-Waters, 12, who was diagnosed with the life-limiting brain disease when she was five years old
- Every penny will fund human trials of new life-saving gene therapy that will help save H-ABC kids’ lives
www.justgiving.com/fundraising/darren-hardy123
Weeks ago, Darren Hardy, a 35-year-old former soldier and father of two young daughters was reduced to tears when he heard about a British schoolgirl, Aggie Candy-Waters, who was diagnosed with the world’s rarest disease at the age of five. Now 12 years old, 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 is losing 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.
“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,” explained Hardy. “I immediately got in touch and asked how could I help? 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. I was planning to run 200km for a bit of a session and so saw this as an opportunity. I upped the distance by 11km and 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, ‘5 in 50’!”
Ali Candy-Waters, Aggie’s mum, said: “We are overwhelmed that Darren, a total stranger, has got in touch to help us in this unbelievably generous way. 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 five marathons in 50 hours, Darren will run continuously without sleeping. He will carry an Osprey pack with Resilient Nutrition pouches for fuel and everything else he needs to make this self-sufficient (water, wet kit, warm kit and first aid kit). His route will see him leaving Poole at 8am on Friday 9th April and running south along the coast as far as Abbotsbury, west of Weymouth, before turning back to Poole.
Aggie, Sofia and Frankie’s families 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, a double gold medallist and Warrior Games record breaker completed numerous extreme sports challenges for charity in 2020, raising £24,000. Five in 50 is up there with the toughest. “I’m preparing for the run by getting up at 4:20 every day at home and hitting the hills, as well as strength work in my home gym” explained Darren. “I’m calling on my sleep deprivation training from the military to help me keep awake, and the energy provided from Resilient Nutrition.”
Forces Cars Direct are supporting Darren and Aggie with a support car for this epic challenge and wish him all the luck and support. You can show your support too by donating at www.justgiving.com/fundraising/darren-hardy123
Darren's Former Challenges:
As a former soldier, Darren spent 15 years in the British Army from 2003 to 2017, serving in Northern Ireland and Iraq, with multiple exercises overseas, from Poland to Canada. His experiences left a lasting impact on him, including a seriously injured shoulder and he has been diagnosed with PTSD.
Sport and training became a big part of Darren’s life as part of his recovery after he was medically discharged and saw him a double gold medallist and Warrior Games record breaker to taking on a number of extreme endurance challenges to push himself physically and mentally. Over the lockdown, Darren raised £16,000 for Help For Heroes and £8,000 for Great Ormond Street Hospital through various extreme sports challenges, including running 112 miles over 37.5 hours on his treadmill at home. His challenges include:
- December 2020 - 190 km World’s Highest Duathlon at 12,000ft (10km run, 150km bike, 30km run)
- October 2020 - 10 Ironman Distance Triathlons in 10 Days in 10 Locations
- Aug 2020 - 933 km Adventure Triathlon - Scotland via the Caledonian Canal: 112 km Paddle Board, 779 km cycle, marathon, 42 km
- July 2020 - 203 km Run-Swim-Run - 84 km to Lepe Beach, carrying 50lbs, 6 km swim across the Solent, with kit and bergen, 113 km around Isle of Wight
- May 2020 - 121 km Charity Treadmill Run - carrying 35lbs Extreme Isolation (World 1st) on VE day
- January 2020 - 480 km Montane Yukon Arctic Ultra
These extreme challenges, Darren explains, are his way of creating a focus point that enables him to better manage his PTSD as he plans and executes them, so he always has another big event on his horizon.
In 2021 after his ‘5 in 50’ for the H-ABC Foundation UK, Darren is targeting further hugely inspiring challenges including an Arctic Triathlon World Record Attempt, swimming in minus 1.8 degrees water and biking and running through snow and ice, as well as a 300+ mile Treadmill Run in the London Eye, without leaving the capsule to raise funds for veterans (every mile to represent a veterans’ suicide). Darren will also tow a double amputee veteran with neurological difficulties on a 3.8km swim, 180km bike ride on a special bike designed for two-men and then push him through the marathon run to help them both achieve dreamsand raise funds for other veterans.
More about Aggie and H-ABC:
In 2012, Richard Waters and his wife, Ali Candy-Waters, took their happy and active three-year-old daughter Agatha to a paediatrician in Cheltenham. Everything about Aggie seemed to be completely normal, except 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 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 forty four known cases in the world. It was such an unknown disease, it had only just been given a name.”
Aggie around the time of her diagnosis in 2014
At the time, Aggie looked and played just like any other little girl of her age, but then further symptoms developed. “We were told Aggie had a rare, degenerative and life-shortening neurological disease for which there was no cure,” says Ali. “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. Walking is no longer possible and she is now wheelchair-bound. She has lost her fine motor skills that enabled her to feed herself. She can’t verbally express herself anymore.
“We had so many hopes for Aggie, and now the future is something we have come to fear rather than plan with excitement. To watch the steady decline of your child is something no parent should have to go through, and over the last eight years we have witnessed her trying her best to cope, but now she needs a miracle.”
January 2020: Finding the H-ABC Foundation UK
Four years after the diagnosis, Ali’s sister learned of doctors in America working on new gene therapy for children with H-ABC. This led to a small charity called H-ABC Foundation UK that had been 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.
Joining forces, the three families are working with the Children’s Hospital of Philadelphia, racing for the cure. Their goal is to raise £1m to start human trials of a treatment which has been proven by the hospital to slow down the disease in mice. This is a lifeline for Aggie, Sofia and Frankie.
Sofia, aged nine, from Caversham was diagnosed with H-ABC when she was four years old. 
Frankie, age five, from Hertfordshire was diagnosed with H-ABC in July 2019. Like Aggie, Frankie was slightly delayed when meeting milestones in his childhood development. Initially, doctors misdiagnosed his condition as Cerebral Palsy.
