Former prime minister David Cameron has opened up about the death of his six-year-old son Ivan in 2009 – and described the “chaos” of caring for him while balancing a life in politics.

Speaking to Sky’s Kay Burley, the former Tory leader, 58, said the loss of Ivan – who had Ohtahara’s syndrome – was “completely transformational”.

Lord Cameron said: “Bringing up children is hard enough but if you have a child who is having seizures every day, is having to be fed through a tube and needs to be cared for all night as well as all day, who’s going in and out of hospital.

“I can still remember the chaos… of you’re in hospital, then you’re back home, then you’re back again. I had just become an MP [when Ivan was born]. I remember turning up for debates in the House of Commons completely exhausted because I’ve been in St Mary’s Paddington [hospital] all night.

“I remember this great blessing of having your first child. In spite of all the difficulties he had with the seizures and cerebral palsy and everything – you still remember this beautiful, smiling boy that you would rest on your lap and look after and love.

“The extraordinary thing about grief is to start with, there’s nothing but black clouds. But after a while, happy memories do break through.”

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Lord Cameron, who resigned as prime minister after the 2016 Brexit referendum before returning for a stint as foreign secretary under Rishi Sunak, has recently started working with a joint US-UK venture that aims to develop 40 new treatments for rare diseases in the next decade.

The partnership between the University of Oxford and the Harrington Discovery Institute in Cleveland, Ohio sets out to bring together academia, pharmaceutical companies, philanthropy and venture capital, Lord Cameron has said. He will be the chair of the centre’s advisory council.

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He told Sky News he believes Ivan’s life “could be very different” if he was born today, saying he and his wife Samantha “didn’t really get an answer” on Ivan’s condition.

“Back then, the first genome was being sequenced, the whole code of the human being – it took seven years and cost $2bn,” he said.

“Today, you can sequence a genome in an afternoon and it will cost you a few hundred dollars so we can see the full DNA, the genetic, biological makeup of a human being.

“That might not provide you with an answer but in some cases it will.

“There are thousands of different rare diseases, but about 80% seem to have a genetic base.

“There have been children born with those sorts of symptoms [that Ivan had] who’ve been identified through genomic medicine, who’ve had treatments, and that has improved their condition.

“There would be a very good chance that if Ivan was born today, and we immediately sequenced the genome, you could spot what was wrong, [and] that you might be able to take steps.”

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Lord Cameron also said he felt “lucky” that he and his wife “took the risk” of having more children after Ivan. They share two daughters and another son – Nancy, Florence and Arthur.

“At the time there was no genomics and genetic counselling back then,” he said.

“[It] was, ‘well, maybe it’s genetic, maybe it’s not’. Could be one in four, could be one in 1,000 – who knows?

“I’m lucky we took the risk. We have three happy, healthy children.”

The former prime minister also opened up about assisted dying, which MPs are set to vote on after a bill was introduced in parliament.

He says he’s “got an open mind” and is “thinking about” the issue.

“I haven’t supported it before on the basis that I’ve always worried about vulnerable people being put under pressure,” he said.

“Once you have some form of assisted dying, what’s the pressure put on people by relatives? I’ve always had that worry and concern.”

But his mind was changed “over the years of watching this debate and listening to the passionate arguments that people have put forward, having also known people with things like motor neurone disease and seen the deterioration and know how awful the end can be”.

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In a wide-ranging interview, he also dismissed claims in Boris Johnson‘s new book that Lord Cameron would “f*** him up” if he supported the Leave campaign in the 2016 Brexit referendum, saying: “That’s not my recollection.

“Any recollection I have is that I had a proper discussion and argument – heated at times.”

Lord Cameron also reflected on a plan to sanction two Israeli ministers while he was foreign secretary, saying it did not go ahead because the work had not been completed and that he was advised it was “a political act in the wrong direction”.

But he added the plan was “a better option than what [Labour] have done in terms of the partial arms embargo on Israel”.

“We do back Israel’s right to self-defence. We just had two missile attacks from Iran into Israel,” he said.

“We’re trying to help prevent that from happening using our own planes and the military. It seems to me utterly bizarre to be banning some arms exports from Israel.”