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Dame Deborah James’s husband Sebastian has revealed how he struggled watching his wife slip away as she died from bowel cancer.

Sebastian appeared on BBC Breakfast with his children Hugo, 15, and Eloise, 13, and praised his wife’s legacy as her fundraising total of more than £11 million was announced, adding they hang onto her mantra of having ‘rebellious hope’.

He revealed to the program that his wife had died somewhat ‘peacefully’ and had been surrounded by her family at the age of 40 in June 2022. 

Meanwhile her teenagers spoke about how ‘unbelievable’ it’s been to see it grow, with their grandmother Heather taking to Instagram to share her pride. Eloise was wearing a poppy dress from her mother’s InTheStyle range, which helped raise money for cancer charities. 

Deborah’s husband Sebastian Bowen had also opened up about the painful process of watching his wife die, speaking publicly for the first time since her passing. 

‘It was just such a difficult, difficult time,’ he admitted. ‘It’s difficult to articulate how hard it really was.’

Sebastian said that Deborah had always ‘wanted to look forward to something’ – and that ‘she kept doing it till the very end’.

He also candidly spoke about there being a ‘peace’ to her death.

Eloise, who wore a dress from Deborah's InTheStyle collection, which was designed in the last weeks of her life, also thanked supporters for their 'mind-blowing' contribution

Eloise, who wore a dress from Deborah’s InTheStyle collection, which was designed in the last weeks of her life, also thanked supporters for their ‘mind-blowing’ contribution

The dress worn by Eloise was from Dame Deborah James's InTheStyle collection which was white and imprinted with red poppies

The dress worn by Eloise was from Dame Deborah James’s InTheStyle collection which was white and imprinted with red poppies

Deborah's husband Sebastian Bowen had also opened up about the painful process of watching his wife die, speaking publicly for the first time since her passing

Deborah’s husband Sebastian Bowen had also opened up about the painful process of watching his wife die, speaking publicly for the first time since her passing

Hugo also said the family still stresses the importance of the 'rebellious hope' their mother had always urged everyone to have

Hugo also said the family still stresses the importance of the ‘rebellious hope’ their mother had always urged everyone to have

‘The reality is, it’s difficult to say, but I think she died in probably one of the best ways you could’ve hoped to die with this terrible disease,’ the father-of-two told the programme.

‘She died surrounded by her mother, her father, her sister, me, all of us, holding our hands…being there for her…

‘It was as much as it can be and that’s the first time that I’d seen someone pass away but there was I think a peace to it.

‘I think she had done everything that she could’ve hoped to achieve.’

Sebastian said he and his family are now determined to do what they can to make life with the illness easier. 

‘There is that strong underlying driver of, let’s prevent it,’ he urged. ‘Hopefully all of us working together…we’ll be able maybe not defeat bowel cancer but at least change the odds that people have.’

Recalling telling his children, on the day of the funeral that ‘if we can get through this together I think we can get through anything’, Sebastian said the message has stayed true for them.

‘I think that’s kind of stuck with us…we’re a pretty strong unit I like to think,’ he added. 

Meanwhile Deborah’s children reflected on their mother’s legacy, of which they remain proud today.  

‘It’s just amazing to think…well first of all the legacy that it is,’ Hugo, 15, told the programme.

Footage recorded before her death shows Dame Deborah James telling her 'awesome' supporters that she is beyond grateful for their donations. She is pictured in the video

Footage recorded before her death shows Dame Deborah James telling her ‘awesome’ supporters that she is beyond grateful for their donations. She is pictured in the video

Dame Deborah (pictured) launched the Bowelbabe cancer research fund last May to raise money for research into personalised medicine for cancer patients

Dame Deborah (pictured) launched the Bowelbabe cancer research fund last May to raise money for research into personalised medicine for cancer patients

Deborah (left) was made a Dame by Prince William (right) for her fundraising efforts, and has now raised £11.3 million

Deborah (left) was made a Dame by Prince William (right) for her fundraising efforts, and has now raised £11.3 million 

‘And second of all the amount that could be achieved with this 11 million is just, I think beyond what anyone could realise at this point.’

Hugo also said the family still stresses the importance of the ‘rebellious hope’ their mother had always urged everyone to have. 

‘It means, regardless of anything, there’s always something that will keep you going,’ he added. 

Eloise, who wore a dress from Deborah’s InTheStyle collection, which was designed in the last weeks of her life, also thanked supporters for their ‘mind-blowing’ contribution and candidly opened up about finding joy in her mother’s health journey.

She revealed she and her mother would ‘dance every second’, particularly if Deborah had a bad day after chemotherapy.  

‘It was good to like help with stuff because you didn’t think about it, you’d just dance,’ she explained.

It comes as this week Deborah thanked supporters for helping her raise more than £11million for bowel cancer in the final seven weeks of her life in previously unseen footage from an upcoming documentary about the campaigner.

Never-before-seen video recorded shortly before her death shows the so-called Bowel Babe telling her ‘awesome’ supporters that she is beyond grateful for their donations.  

At the same time, she announced she was receiving end-of-life care and would be looked after at her parents’ home in Surrey.

A new documentary about Dame Deborah’s life – titled ‘Bowelbabe: In Her Own Words’ – will air on BBC 2 in the coming weeks and give fans an intimate insight into the campaigner’s bittersweet journey from living with incurable disease, to Damehood and to her untimely death. 

Deborah’s family and Cancer Research UK (CRUK) revealed that the former deputy head teacher helped raise £11.3million before she died.

She also left behind a video message expressing her gratitude over the success of her campaign and her plans for how the funds raised would be used. 

‘One thing I wanted to do before I passed away was to set up the Bowelbabe fund,’ Dame Deborah said in the video. 

‘I wanted to set it up to ensure that more people can benefit from some of the things that I benefited from.

‘We will ensure that more people have access to personalised medicine, clinical trials, cutting edge technology to help more and more people live longer with cancer.’

She added: ‘Every penny counts. I cannot thank you enough for your support of the Bowelbabe fund. You are awesome.’

CRUK has also announced the initial research projects that will receive Bowelbabe funding. 

One study will look at laying the foundations for new precision treatment that could stop bowel cancer spread. It will be led by Professor Trevor Graham, director of the Centre for Evolution and Cancer at the Institute of Cancer Research, London.

Another project, involving a team of leading scientists, will look at targeting microbes that might cause bowel cancer.

This team has already discovered a type of bacteria that increases the risk of bowel cancer in some people under 50 and is exploring whether it might be possible to target these bacteria to reduce bowel cancer risk.

A further project, led by Dr Oleg Blyuss from Queen Mary University of London, will look at using artificial intelligence and blood tests to detect the earliest signs of cancer.

At the Royal Marsden cancer hospital in London, an advanced IR X-ray machine will also offer better imaging resolution that will allow more patients to be treated.

The projects announced, collectively totalling around £4 million, are the first round of funding, with more projects due to be confirmed later this year.

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This post first appeared on Daily mail