A former soldier has formed a close bond with a girl fighting a deadly brain disease – and launched a mission to try to save her life. Dad-of-two Darren Hardy, 36, was reduced to tears when he heard about schoolgirl, Aggie Candy-Waters, who was diagnosed with a deadly brain condition aged five.
Now 13-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.
But, there is new hope. Doctors at the Children’s Hospital of Philadelphia have made a breakthrough. New gene therapy that slows down the disease in mice could help save Aggie and children like her – but £1 million is needed for human trials to begin.
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Darren, who served in the British Army for 15 years, took on a challenge starting in Salford that was so gruelling it will now take him six months to recover
He has tasked himself with running ten consecutive marathons in 100 hours from Manchester to London. He is raising money to find the world’s first treatment for this rare, incurable and deadly disease known as H-ABC – a severe form of TUBB4a leukodystrophy. Sickness and stress fractures meant he completed 7.5 marathons in 90 hours – and to date has raised over £32,000 for this challenge.
For Aggie, and thousands like her around the world, there is hope for a treatment, yet without vital fundraising from people like Darren, there is a chance that the medications under development will not be ready in time. “I’m not embarking on this light-heartedly,” he said before the challenge, which began at Salford Quays.
“I’m going to need to draw on every ounce of motivation and determination to make it through. I am fascinated about testing the limitations of the human body, but this one is going to truly hurt.”
Having been medically discharged from the army with PTSD in 2017, Darren’s mental health saw him on the verge of taking his own life. Saved by the support of his family and training for ever more extreme physical challenges, Darren regularly refers to his bid from him to push human performance further than ever as “his therapy from him”.
Hardy, from Hampshire last year ran 131 miles (211km) along the south coast and broke two world records by pulling a car, meaning the total figure he has raised is actually over £42,000. He said: “After the south coast challenge I was ruined for months, so that puts the enormity of this into context.”
“I got to know Aggie and her family last year, and we formed a deep bond,” he said. “I felt angry and frustrated that more couldn’t be done.
“The injustice of her condition and the lack of a treatment just hit home. That’s when I found there was hope.”
“There were people around the world working on a treatment, but there just wasn’t the funding to complete it. Ever since then I’ve done whatever I can to help – even putting my body on the line.” Darren who has two daughters, aged three and five, says “seeing a little blonde girl like this, it made me think of my own children.”
“A massive part of the motivation to get to the finish line is the knowledge that every step I take is helping Aggie and children like her live a longer, more fulfilled life.” Part of his mission also includes visiting three young H-ABC patients, and biotech company SynaptixBio, which is developing the treatment for TUBB4a leukodystrophy.
Aggies mum Ali Candy Waters, who lives in Gloucestershire, referred to Darren as a modern-day superhero.” She said: “He’s willing to risk his own health and push his body from him to the absolute limit-all to help our little girl. We really can’t thank him enough.”
Darren is now recovering from the trauma his body has experienced and says he is still limping. But he sums it up clearly: “The whole point is that I will heal with time, he says, “whereas Aggie won’t heal – and she doesn’t have time.”