Hazel Southam - Journalist

Sebastian's Dying Dream

Woman’s Weekly 14 April 2015: Sebastian Gates knew he was dying when he asked his mum to open a holiday home for other terminally ill children.

Back in 2001, seven-year-old Sebastian Gates – lively, cheeky, affectionate and sporty – was at school preparing for a swimming gala, when he was sick.
He vomited again over the weekend, but as he then felt well enough to play cricket and football, his parents, Mike and Jane, weren’t too concerned. But back at school on Monday, Sebastian said he didn’t want to go out at break time. ‘Something in me clicked,’ Jane recalls. ‘My son would avoid a maths test, but he wouldn’t miss break time.’
A trip to matron led to a visit to the GP, then straight to hospital for tests. It was the start of what Jane calls ‘every parent’s worst nightmare’, which was to end years later with Sebastian’s death.
‘I’m sorry,’ said the doctor, ‘I suspect your son has a form of cancer called nephroblastoma. It starts in the kidney and I think that it’s spread to his lungs.’
Afterwards, Jane stood outside the hospital, shaking, trying to phone Mike at work. ‘I was in complete shock,’ she says.
Sebastian had chemotherapy to shrink a tumour that doctors said was the size of a rugby ball. The tumour was them removed surgically, followed by more chemo and radiotherapy.
Six months later, Sebastian returned to school and was even made captain of the football team, but shortly afterwards, the cancer returned. ‘Call it parental intuition,’ says Jane, ‘but there was a part of me that knew it wasn’t going to go well. Still, we made the most of every single day.’
Sebastian stayed positive and recovered well from another operation…then more slowly from a second. Doctors warned the family that he might only have a year to live. As they tried to take in the devastating diagnosis, they had no idea that in the short time that remained to Sebastian, he’d be the inspiration for a scheme that would help children just like himself, and their families.
It all came about as the result of a seemingly inconsequential moment as Sebastian waited to have an operation to put a tube into his breastbone, which would be used to administer medication. Jane was reading a leaflet about a holiday home for families with sick children and Sebastian took it and read it, too. ‘This is great, Mummy,’ he said. ‘But it’s too small and it’s not open all year round. We need somewhere bigger that’s always open.’
After his operation, Sebastian remembered what he had said. ‘I mean it, Mummy,’ he said. ‘We need to raise the money for somewhere like this.’
As the Gates family knows all too well, having a holiday with a sick child is extremely difficult. Where can you go that will cater for all your needs? Where can you be private, where people won’t stare? Can you actually get away at all? Will your child be well enough to leave home?
These were the questions that Mike, Jane, Sebastian and his older sister Rebecca asked themselves endlessly, taking their own experiences into account – the 13 times they had tried to get away, succeeding only once.
At one stage, with a holiday planned, Sebastian relapsed. Crying, he said, ‘I’m so sorry. I’ve spoilt it all again.’
‘He was so upset, but not for himself – for stopping us having time together,’ Jane remembers.
‘Until the day he died, on Christmas Eve 2003, two months before his 10th birthday, he was resilient and cheerful,’ says Jane. ‘We were incredibly fortunate to be Sebastian’s parents and we couldn’t walk away from his idea. I don’t know any parents who wouldn’t honour their son’s dying wish – do you?’ she says.
After Sebastian’s story had been printed in the local paper, the family’s aim became more widely known. Fundraising began in earnest and, five months later, in 2004, Jane and Mike registered Sebastian’s Action Trust as a charity.
Since then, over £5 million has been raised and in July 2011, The Bluebells opened. It’s a three-acre site on the edge of farmland in Hampshire, which offers accommodation to families of children with life-limiting conditions. Since then, some 400 families have been to stay in its modern apartments that are designed for children with disabilities or profound illnesses. A further 4,000 have made day visits to the spa pool, music room, sensory room and gardens. Sebastian’s dream has become a reality.
‘I think of it like this,’ says Jane. ‘I do what he can’t do for himself. And thanks to Sebastian, families have the chances that we didn’t. We give them precious time to go away together so they can relax and recharge and build memories.’
The Bluebells has many supporters, including PM David Cameron, who said, ‘The Trust makes a real difference to the lives of very ill children and their families.’ It also received a visit from the Countess of Wessex and Bake Off contestant Martha. It has received several awards, including the Pride of Britain Special Recognition award and Jane even received and OBE in the Queen’s New Year’s Honours list. She groans when I mention it. ‘I am proud,’ she says, ‘but this is a team effort.’ Sebastian remains part of that team. ‘I think about him all the time,’ says Jane. ‘He’s in everything I do. You can never overcome the loss of a child – one learns to get better at living with the loss.
‘Sebastian brought joy to his family, but was selfless enough to think of others at a time when he could turn his wishes into something that could help other people. That makes me hopeful. We can help other people to build happy memories and we can hold their hands through the dark days that may follow.’

hazel-southam

About Hazel

Hazel Southam is an award-winning journalist who reports on religious affairs, international development and the environment. She has covered four G8 Summits.

She wrote for The Sunday and Daily Telegraph for 10 years. Her work has also appeared in The Guardian, The Independent, The Independent on Sunday, The Daily Mail and The Evening Standard.

Reporting assignments have taken her to places including Bosnia, Zimbabwe, Mongolia, Albania, Nagorno-Karabakh, Senegal and the Arctic Circle.

In the UK, she has also delivered media training to the MOD and leading businesses.

Contact Hazel