A ticking time bomb
in the family

How the death of Miles Frost will
help keep many other hearts beating

Heart disease took Miles Frost without warning. Now his family has joined forces with the British Heart Foundation to help make sure other families don't suffer the same heartache.

“If you think of all the parts of Miles’ life and you ask: ‘Did he have a happy life? Did he make the most of his time?’ The answer is yes. Our shared childhood was extraordinarily loving and blessed.”

Wilf remembers Miles, the older brother he adored.

Miles was the first child born to Sir David and Lady Carina Frost. Carina says: “David and I got married what was in those days quite late; I was 31 and he was 43. We were madly keen to have children, and thankfully I got pregnant within six months.

“I will never forget the whole joy of literally handing Miles over to David. David was just totally besotted with Miles the moment he was born.

“Among my sisters, I had the first boy, so I named him after my father, Miles. It means a soldier in Latin - Milo. And he was a little soldier.”

Two more sons, Wilf and George, followed within two and a half years.

“It was the biggest high for both of us. David worked incredibly hard and was always on a ‘plane. But his first thing when he came back from a trip was to see the boys. They had a very special upbringing surrounded by love.”

Miles relished the role of older brother. “He always looked after his brothers,” Carina says. “They always went to him if there was a problem. But he wasn’t a boring oldest child. He was full of fun.”

The three boys were so close in age that they were more like triplets. Carina says: “Much to their fury I dressed them all alike!”

George was the youngest of the three. He says: “I think one of the things that was really neat was that, while other sets of siblings have that natural respect for the older brother, we had a real friendship.

“If we had a couple of extra tickets for an Arsenal game we would take a brother rather than a mate. We were such a tight unit.

“If anyone wanted to invite us to something you sort of got us as a set.”

“Being close in age allowed us to do that,” adds Wilf. “Because we had similar interests at the same time. When we played sport, the competition was there between us, but we always wanted the best for each other.”

Carina adds: “The boys had this fantastic life that David and I were so happy sharing with them.

“They were our everything.”

Miles’ close-knit family life was the foundation for the man he became – a natural leader whom everyone went to for advice.

Go-to guy

Miles was a trusted godparent to his friends' twins.

Miles always seemed to have a wisdom beyond his years. An ‘old soul’ even as a teenager, who embodied a natural authority. He became an adult who was admired for his generosity and insight. Among family, friends and colleagues, he was the go-to guy.

“He was the leader of our pack,” says younger brother George.

"You have captains who are arrogant and who bark orders, and you have others who lead by example. Miles was the latter. He had authority and wisdom and led by example.”

Wilf remembers that even as a schoolboy, Miles was the one who would look out for others.

“At school if someone was having the mick taken out of them, even if it wasn’t particularly malicious, Miles would never join in, and he would always stick up for them.

“And when he was older, on social occasions if someone looked a bit isolated he would go out of his way to bring them into the group.”

His caring nature became a lifeline to Carina when in August 2013 the family received the devastating news that David, 74, had died while on a speaking engagement on board a cruise ship.

Carina says: “When David died we were all in such pain and it totally changed our life because he was such a huge part of it.”

“All the boys were wonderful through this time. But Miles would always check in. He was always there for me.

“After David died I just couldn’t have survived without Miles.”

A year on, Miles led the prayers to his father at a memorial service at Westminster Abbey. Typically, he was by his mother’s side.

Following his time at Newcastle University Miles had built a career as a financier, setting up his own investment company, and he had embarked on a serious fitness drive.

Miles was a keen skier and tennis player, and in 2013 he ran a tough half marathon through a Kenyan game reserve.

When he died so suddenly Miles was in his prime.

He was getting great satisfaction from the business he had created, which was beginning to help promising companies grow, he was admired among his various circles for his strong moral compass, and physically he was at his fittest.

Wilf says of his brother: “If you’d seen him the day before he died everyone would have said Miles is looking so good - so fit and so healthy.”

Final day

Sunday, 19th July 2015 was unfolding as a normal day in the Frost family home. It began with Miles having breakfast with his mum, Carina, in the kitchen.

“Miles was always the first up and I would cook him breakfast and he would refuse to talk to me because he had his head in the papers. Except that morning we really talked.

We chatted, Miles held my hand and he thanked me for being an amazing mother.”

He walked out of the front door to find his youngest brother, George. Wilf was at a music festival in Sweden, so it was just the two of them.

George says: “He took a very stupid pic of me in my swimming trunks lying on a bench so I could stick it on Instagram, and then he started his workout. He did some boxing on a punch bag and he went off on a run at about 12.30.

“Mum came over at one o'clock and said: ‘It’s lunch.’ Miles wasn’t back, and Mum said ‘OK, we’ll wait for him.’

Ten or fifteen minutes later she came back and said it again: ‘It’s lunch. Where’s Miles?’”

“I knew something was wrong,” says Carina. “Looking back on it I think there was something about that day. I had an amazing breakfast with Miles, and it was very unusual for him to be so chatty at breakfast.

“As he walked out of the front door I looked over at him and said: ‘You have the longest eyelashes I have ever seen.’ And that was the last I saw of him.

“I worried rather too quickly that Miles wasn’t back. There was something about that day.”

A niggling worry persuaded George to jump into the car and go looking for his brother.

“At the first bend of our driveway I saw him.

“His head was on the grass and his body was on the drive. Initially I thought: ‘Idiot, he’s lain down to sunbathe and fallen asleep.’ But as soon as I got out I thought, ‘Oh my God, this is something different.’

“And then I just remember sprinting up to him.

“His mouth was dry.

"He wasn’t breathing.

“I dialled 999.

“The woman on the end of the line told me: ‘This is what you’re going to do.’

“She told me to put down the phone and talked me through trying to resuscitate him.”

George began CPR on his brother. For 11 agonising minutes.

“I was pouring with sweat,” says George, “just pumping his chest and doing one, two, three...

"Until the ambulance, and then an air ambulance arrived.

“The paramedics arrived and took over. And then I ran to get Mum.”

“I just went running, running down,” says Carina.

She was greeted with the shocking sight of her eldest son’s apparently lifeless body, surrounded by paramedics.

They continued to work on Miles. Until finally one of them walked to Carina and George as they waited by the car and told them:

‘We have done everything we can.’

Wilf was due to fly back from Sweden that evening. George and Carina went to meet him, to make sure he heard about his brother’s death from them first.

“It was instantaneous, unbelievable shock,” says Wilf.

“The immediate and excruciating pain. Standing there in the walkway of the airport, we broke down together.

“Then we went home and started calling people. For the first 24 hours the private reaction to Miles’ death was extraordinary. And when it hit the press a day or so later there was this amazing public reaction too, even though this was Miles, not Dad.

“It brings it back to the phrase that so resonates with all of us: grief is the price you pay for love. The terrible pain has highlighted how much Miles was loved.”

The question on so many people’s lips was, ‘How?’ How can someone so young, so fit and apparently healthy die so suddenly and unexpectedly?

Finding the gene

The family discovered that Miles had died of a hidden heart condition, hypertrophic cardiomyopathy (HCM).

It can cause thickening of the heart wall, and can sometimes lead to a cardiac arrest. Being young and fit is no protection from this heart condition.

It can go undetected in families until, like Miles, an otherwise healthy person dies out of the blue.

But thanks to research funded by the BHF, the genes responsible for HCM can often be identified.

We funded two researchers, Hugh Watkins and Bill McKenna, to search out the cause of HCM. They were among the first to find faulty genes and have since discovered more.

The most exciting science, on the cusp of changing medical practice

This means that now, if someone in a family is diagnosed with the condition, other members of the family can be offered a potentially life saving genetic test to find out if they are at risk.

Despite scientific breakthroughs, roll out of genetic testing for families is slow and it’s a lottery as to whether people at risk will be referred. It’s a situation that the BHF, and Miles’ family, are determined to change.

They hope to improve services so that families at risk are referred for the clinical and genetic testing that could save lives.

“Miles had a wonderful, happy life,” says Wilf. “The best way of us honouring his memory is for us to take action, in partnership with the British Heart Foundation, to help save lives in the future.”

The Miles Frost Fund

Miles’ family is determined to create a fitting legacy for him.

The Miles Frost Fund, in partnership with the British Heart Foundation, will ensure services are in place so that when someone is found to have the condition, family members can be referred for potentially life saving testing.

Miles died in July, and by August it was confirmed that he had died of hypertrophic cardiomyopathy.

“I had never heard of the term,” says Wilf. “But we have since learnt a lot more about it. It affects the heart muscle and it can cause thickening of the heart, and it can sometimes lead to a sudden cardiac arrest”

The Frost family have discovered that their father probably passed the condition to his son. David didn't die of HCM but his post mortem showed that the condition was present. Unfortunately Miles, George and Wilf were not tested at the time.

Since Miles' death, both Wilf and George have had genetic tests, to see if they carry a genetic fault that causes this potentially deadly disease, and are now waiting for the results.

Wilf says: “Clearly in emotional terms there is little consolation that will ease the pain of Miles’ death. But doing something you know will make him proud gives you some contentment.

“After he died I went to see his body in the hospital and I told him how much I loved him. And how grateful I was for everything.

“In all aspects of life - from girlfriends, to university, to interviews and work - he completely guided me.

“I made four promises to him. One was to follow his example in always trying to do the right thing.

“Doing things as he would have done them. That is the way we are trying to take something positive out of it.

“I’ve learnt two important things about the heart condition that killed Miles. One is that it’s not in fact that rare, and the second is that we can do something about it.

“That is such an important motivation for the fund we have set up in his name.

"There could be up to 120,000 people in the UK living with it. There is a lot we can do to help prevent people dying by ensuring genetic testing and expert advice for family members of those affected is accessible nationwide."

“Losing someone so young has to be preventable.”

Miles’ mum, Carina, adds: “Miles has lost his life to this condition, and that’s why I so want it to have his name and to be the Miles Frost Fund.

“If we could stop even one of these deaths we will say Miles didn’t die in vain.”

“We want to make sure that other families don’t suffer the devastation we’ve been through.”