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.”

Cabinet ministers are writing to the prime minister in an urgent attempt to soften some of the spending cuts being demanded ahead of the budget. 

The main measures for the budget have to be decided by the end of Wednesday and sent to the Office for Budget Responsibility before the Treasury shuts up for the evening.

Sky News can confirm letters from cabinet ministers complaining about the budget have gone over the head of Chancellor Rachel Reeves to Sir Keir Starmer and Number 10.

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Some of these letters are believed to have gone in over the last couple of days.

After today, only small changes can ordinarily be made to the budget, typically around involving items of tens or hundreds of millions rather than billions. The existence of the letters was first reported by Bloomberg.

Some cabinet ministers are deeply concerned about the scale of the cuts being demanded in some areas to fund pay rises and spending increases elsewhere.

It is understood that Number 10 has received complaints from four government departments: the Ministry of Housing, Communities and Local Government, the Department for Transport, the Department for Environment, Food and Rural Affairs, and the Ministry of Justice.

Not all of these complaints were made through the medium of a letter.

It is understood the call for an intervention by Number 10 has helped soften a small portion of the cuts for some cabinet ministers’ departments.

But largely the shape of the budget, which is for the most part wrapped up tonight, has remained unchanged – and so have the nerves about how it will land in two weeks.

At the weekend, Sky News revealed one cabinet minister said: “The briefing doesn’t match the reality. It’s pain this year, and pain next year. We’re simply going to be digging a hole which we end up filling in later in the year.”

Ms Reeves will loosen the borrowing rules in the budget in order to give herself more room for spending, along with raising up to £40bn in tax rises and welfare cuts in order to relieve pressure on budgets.

But the cost of significant public sector pay rises, which are still going to have to be found from within departmental budgets, mean cuts this year and next are still being demanded by the Treasury.

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Some ministers believe the cuts are unsustainable, while some have pointed to the first round of spending reductions announced before the summer – including the winter fuel allowance changes – as evidence more input from Number 10 is needed ahead of the budget and spending review on 30 October.

One government source told Sky News: “The whole of Number 10 is focused on the budget at the moment and there isn’t much bandwidth for anything else.”

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Government figures insist that letters voicing concern are routinely sent at this point in a spending review process and that this is all normal.

Both Sir Keir and Ms Reeves are out of the country next week, the week before the budget. However, only smaller changes can typically be made after today to the shape of it.