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David Cameron opens up on the death of his son aged 6 as he leads push for treatments for rare diseases
16 October 2024, 07:56
David Cameron opens up to Nick Ferrari about the death of his son
David Cameron has opened up on the death of his young son Ivan as he discussed his push to develop more treatments for rare diseases.
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Former Prime Minister Lord Cameron told LBC's Nick Ferrari at Breakfast that his son Ivan, who suffered from an extremely rare condition called Ohtahara syndrome, might have lived longer if he had been born today - such are the improvements in medical science.
Ohtahara's syndrome was less well understood 20 years ago when Ivan was born, and doctors struggled to diagnose his condition.
Lord Cameron's comments come as he lends his support to a push to develop treatments for dozens of rare diseases over the next decade.
"Very soon after his birth, he started to have sudden jerky movements, and soon we could see he was having epileptic seizures, and it was obvious he was not going to develop as a normal child would," Lord Cameron told Nick.
"He had cerebral palsy. He was quadriplegic. He couldn't move his arms and legs, he couldn't talk. Eventually, had to be fed through a tube. He had these terrible seizures, sometimes as many as 20 in a day, and very sadly, he died when he was just six years old."
Lord Cameron said that when Ivan was born, tests for his condition were "quite primitive" - such as "blood tests and checking spinal fluid and doing brain scans".
But he said that "nowadays, you could sequence his genome immediately with one prick of blood, and you'd be able to have all the information about his genetic makeup. And it might be that that would give you a clue to what was wrong.
"And if that was the case, then you might be able to intervene very quickly with perhaps a change of diet, with a different molecule, with a even rewriting part of what's wrong with the gene through what's called gene editing.
"So science and medical science has really leapt ahead in the last 20 years, and my 'eureka' moment was being at a conference in Oxford quite recently where this was being described.
"And I really thought it's very possible that if Ivan was born today, you know what he had, would have been diagnosed immediately.
"And it's possible there could have been a treatment that would have changed his life and made it longer, and he would have been able to do many more things than he was able to do."
He said that over 20 years since Ivan's death he had learned "to live with... grief and happy memories".
"As I always say to anyone who's lost anybody close to them, to start with it's dark clouds, and nothing ever seems that it's going to come right. And over time, happy memories come through, and you have dreams and memories of them being being happy, and the smiles they gave you and the love that you you shared with them.
"And so that has got much better over the years, as you'd expect, but the memory of what it was like having a desperately ill child and rushing from hospital to hospital, doctors to doctor, to try and find out what was wrong."
He told Nick that the first thing he learned from caring from Ivan was "how much you love your wife, and how much you want to stay together through the most difficult times, and how you want to try and deal with it together."
He added: "We always had a happy marriage, but... we felt we were team Ivan trying to try to help him."
Lord Cameron said the advice he gives to people who have disabled children was that "you're not angels."
"Just because you've got this incredible burden you have to bear, it doesn't mean you're some angelic figure. You've got to recognise your shortcomings.
"And I certainly found many of those myself. You know, we weren't born to be carers. You know, we had to learn, and we often fell short. Me particularly."
Lord Cameron was speaking as he announced he would be fronting a UK-US effort to cure 40 rare diseases over the next ten years.
The project will be run by Oxford University and the Harrington Discovery Institute in Cleveland, Ohio. Lord Cameron will be the chairman of its advisory council.
He said the UK was the best place to run the Oxford-Harrington Rare Disease Centre because of its strong research capabilities, the relatively fast-paced drug licensing scheme and the NHS as a "data resource".
"If we can use all those things - the scientists, the healthcare, the NHS, the regulatory agency, we should be able to get these treatments into the marketplace faster than anyone else," Lord Cameron added.
"And that's not me saying that. I've been at conferences where I've heard scientists from California saying Britain is absolutely the right place to do this."
Researchers on the project will compare the typical human genome with the genes of people suffering from a rare disease to see if there are any notable differences.
"It's a vital bit of information about our makeup that can help us to get to the bottom of things that are going wrong with us," Lord Cameron told Nick.
He said that after Ivan's diagnosis, doctors told him and his wife Samantha that there was a one in four chance that if they had more children they would have the same condition.
"Luckily, we gambled and went ahead, and we've got three lovely, healthy, happy children," he said.
"Now, you know, it's not such a lottery. You'd sequence the genome, you'd have much more information. You'd be able to give more information to parents."
