The news of his son's illness came out of the blue one January day four years ago. Life until then had been good for Alex and his wife, Donna. Harrison was born in 2006 and seemed perfectly healthy. But after the birth in 2008 of William, the couple's second son, the boys' parents began to make comparisons.
"At 11 months, William would jump to his feet and run off," recalls Alex. "Harrison, then three, used to lever himself up from a chair. He'd move like a little old man, very laboured. It made us wonder."
The hunt for a diagnosis lasted a year, and eventually, after months of blood and genetic tests, the family were summoned to St George's Hospital to be told the results.
"It was the worst day of our lives," says Alex.
"The experience was bizarre. There was Harrison, playing with his toys on the floor, loving life, excited to be at the hospital. And the consultant was telling us that he had Duchenne's, that he was going to die and medicine had nothing to offer him. Time really stands still in a moment like that.
"We were told: 'Take him home, love him and give him a good life.' Then, almost worse, if possible, the consultant looked at us and asked: 'Do you have any more children?'?"
It was a heart-stopping moment. "But, even then, Donna and I weren't worried about William," Alex says. "He was so different. We had him tested, but weren't surprised when the tests came back negative."
There are several kinds of muscular dystrophy (MD) - inherited genetic conditions that gradually cause the muscles to weaken, leading to increasing disability. Duchenne's, usually found in early childhood, is the most common type, affecting one in every 3,500 boys in the UK; it is also the most severe, affecting the heart and the respiratory muscles. On average, boys with Duchenne's live only into their 20s or 30s. That is a vast improvement since the 1960s, largely due to better care.
Boys with DMD lack dystrophin, a protein vital to maintain muscle strength. Females are carriers of the DMD gene but rarely have symptoms, because the gene mutation that causes it is on the X chromosome. Unlike males, females have two X chromosomes, so if there is a defective gene on one, a normal gene on the other can compensate.
Though there is no cure for Duchenne's, medication and physiotherapy can alleviate its symptoms. (A new drug, Translarna, has become available in Europe for a type of DMD caused by a particular genetic mutation. Some British families are demanding emergency access to it, but in December NHS England put a decision about the drug on hold while it reconsiders how to assess new treatments. "We've been actively involved in the fight for fast access to Translarna," Alex says, although it would not help Harrison.)
A few months after Harrison's diagnosis, Alex's extended family met for a barbecue.
"We were sitting around the table, saying 'what can we do - should we raise money, and what for?' From that conversation came the idea for Harrison's Fund, a charity devoted to raising money for research into DMD, with me as founder and CEO. We felt we could make a difference."
Alex insists that the charity has something different to offer from existing MD organisations, with the focus on treatments to prolong life in the hope a cure may be found in the sufferers' lifetimes.
Within 18 months, Alex had given up his job as a branding consultant to focus on his new role. It meant a big drop in income and a change in lifestyle at the family home in Cobham, and running a charity was a steep learning curve. "But I had so much help from my and Donna's family," says Alex. "Dad is a chartered accountant, and does the books. And Mum was a fundraiser for the NSPCC, which has been really helpful."
Alex's marketing background meant that he understood the importance of getting the message right and then spreading it.
The first advertisement in 2013 followed a conversation with the ad agency AIS London, which had chosen to support Harrison's Fund as its charity of the year. "I'd told them that I wished my son had had cancer instead - just because that would have given him a shot at a cure. With DMD, there was no chance." He knew that the resulting ad would be shocking - and indeed, after its launch, the charity was inundated with positive and negative comments.
But Alex has no regrets. "I hated and loved it in equal measure. The agency feared to run it, but I didn't."
The agency's latest ad features a cowering dog and reads: "Would you give £5 to save Harrison from a slow, painful death?" Only by reading the small print does one realise that Harrison is a boy, not a dog. It follows last month's experiment by the agency in which two versions of a fundraising ad linking to the charity's website - one with an image of Harrison and one of a dog - appeared online. The dog ad received twice as many clicks.
Alex says: "I love dogs, too. But you have to ask why would anyone prioritise a dog over a child?"
Harrison is losing strength and now struggles to get to his feet - he has a wheelchair for use outside, though he prefers not to use it at home. "Our focus in the next five years is to fund research that looks into ways to stop progression of the disease," says Alex.
Meanwhile, he has taken up running, which helps him to "switch off from everything". He also competes in fundraising races: his ultimate aim, in June, is an iron distance triathlon - a 2.4-mile swim, a 112-mile bike ride and a 26-mile run. Alex will take his five-stone disabled son with him, hauling Harrison in a catamaran behind him as he swims, pulling him in a trailer as he cycles, pushing him in a wheelchair as he runs. Poignantly, the most important reason for Alex to stay fit is that he needs to become stronger as Harrison becomes weaker. "At 18, he will need me to be strong enough to lift him.
"My family have been pretty surprised at the change in me," he adds, laughing. "My siblings were all very sporty, but I was the smoker and the drinker. I was the party guy."
Now he can't imagine life being any different. His original plan was to give 10 years to the charity, but says: "Who knows what will happen? I imagine Harrison saying one day: 'Daddy, if you can't help me, you need to help others'. And my biggest fear is him asking me: 'Daddy, could you have done more?' That fires me up and keeps me going."
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