When Anna’s Hope was founded 10 years ago - in October 2006 - the aspiration of founders Carole and Rob Hughes was to make the difference to a suffering child.
Still in the midst of their grief, the husband and wife couple had lost their youngest daughter Anna, who gave her name to the charity, just a few months before on May 1, 2006, from a brain tumour. Anna was just three years and eight-months-old, when she lost her battle at home with her mummy, daddy and big sister Sara all by her side.
It was no mean feat for the couple to turn their attentions to setting up a charity so soon after Anna died - not least because Carole had remained by her daughter’s hospital bedside, while she underwent a six hour operation to remove the “peach-sized” tumour from her head, followed by 15 months of gruelling chemotherapy, while husband Rob had juggled his job as MD at Mars Pet Foods with caring for his family.
But their entire focus was helping other children and young people with brain tumours - and that remains their focus a decade later.
“I sometimes wonder if she was sent to make us do this,” says Carole talking at home in Pilsgate, near Barnack.
“If Anna was here today she’d be a teenager at school and our lives would be very different. But we wouldn’t be who we are today either - it’s made us better people being able to cope and to help other people. I’ve done things I never could have imagined. Anna’s Hope has given us a purpose in life.”
Anna herself was an unexpected miracle. The couple believed they couldn’t have any more children after Sara and got a dog instead. So when Carole was 40 she was stunned to find out she was pregnant with her second child and doted on her new “beautiful little girl”.
“I was so proud and I remember looking in her cot and thinking I can’t believe you’re mine.”
But at two and a half, Anna complained of feeling unwell - dizzy, sick, earaches, headaches and holding her urine. After numerous doctors appointments, they were finally referred to Peterborough District Hospital, where a CT scan was conducted. She was moved to Addenbrooke’s Hospital in Cambridge after a “brain abnormality” was detected during a MRI scan and put on a cancer ward, although her parents initially didn’t realise that was the case.
Carole recalls: “I remember seeing children with leukaemia and kids with no hair and thinking we were the lucky ones...”
An operation to remove the tumour got rid of it by 98 per cent and chemotherapy then started. Anna was fed via a nose tube after losing her swallow during the operation. She also had to relearn to walk.
“To say we’ve been to hell and back is an understatement,” says Carole. “It was like being in a greasy cake tin and you keep trying to climb to the top and each time you get near, you slide back down. But we always made sure Anna had a permanent smile on her face - we had to keep positive all the time. We just hoped and prayed that our Anna would be one of the lucky ones.”
Sadly it wasn’t to be - and the couple were given the devastating news the cancer had spread and there was nothing more that could be done.
Anna spent one of her last days at Belton House in Grantham, playing on the playground and riding the miniature train. Just months later, the charity was launched at Belton House.
Carole and Rob acknowledge that their devastating loss could have driven them apart but instead they say it bonded them as a family - and their focus became Anna’s Hope. When the charity was founded - with Anna’s Godparents as trustees - the aims were simple: helping children through their treatment and helping with rehabilitation.
Rob, 60, says: “Our biggest concern was that if Anna had have survived, there would have been no support and we wanted to put something in place. Through my connections at Mars, I thought I could raise a bit of money.
“It’s bizarre what people do in grief. Just weeks after her death we went to a brain tumour conference because we wanted to understand why this had happened.”
It was there the couple gave the charity it’s name and they set their sights on raising £1m. The logo for the charity - a smiling fairy - was drawn by Sara and depicts her little sister before she got sick. Wearing a pink dress, the fairy has blue wings to reflect Anna’s favourite colour and is carrying blue forget-me-not flowers; in tribute to the fact she’ll never be forgotten. More than 30,000 pin badges showing the fairy have been produced and even if you don’t know Carole by name, you can’t have failed to spot her dressed in brightly coloured wings, a tutu and waving a sparkly wand - supporting those that give their time to raising vital funds.
“I wear a fairy outfit more than I wear normal clothes,” laughs Carole. “I’m the heart of the charity and Rob is the head. I’m definitely the mouth!”
And in the decade since setting up the charity, so much has been achieved. The first major milestone in 2008 was funding a specialist children’s oncology nurse for Addenbrooke’s Hospital, who the charity funded for three years before the hospital took on the financial responsibility. And in 2013, Anna’s Hope funded the Anna’s Hope Therapy Team, also based at Addenbrooke’s, as part of a rehabilitation team called Brainbow. The therapy team includes a speech and language therapist, a physiotherapist and an occupational therapist, and together they work alongside the nurse already funded. All of these new roles are staff Anna never had access to herself but needed so much.
And to raise the huge amount needed, so much has been done locally. Rob himself cycled from John O’Groats to Lands’ End and the couple organise an annual Fairy Ball in Anna’s memory. They also have a close association with the Perkins Great Eastern Run in Peterborough, so much so that the fun run is now known as the Anna’s Hope 5K Fun Run. And hundred per cent of the money raised goes to helping children with brain tumours - there are no paid for members of staff. In fact the charity itself is run from a small table in the corner of the Hughes’ home.
“We’ve had big cheques and we’ve had little cheques but so many people make us feel humbled by what they have done for us,” Carole says.
And while 2016 might be a cause for celebrating all that’s been achieved, there’s no plans to stop.
“I think it might change direction but whilst there are still stories out there and people who need help, and people who want to help us, we will keep going,” says Rob. “Who knows where the next 10 years will take us?”
As well as raising funds, Carole has been lobbying for the Government to better fund brain tumour research and through a review of children’s neurosurgery that Rob was involved in, he was asked to become the chairman of the Peterborough and Stamford Hospitals Trust - a role he is clearly revelling in.
Carole was shortlisted this year in the Clarin’s Woman of the Year and the Mercury recognised the couple’s hard work over the last 10 years with the Lifetime Achievement Award at this year’s Mercury Business Awards. But it is not personal recognition that drives them forward.
“We are busy but it’s incredibly fulfilling to hear someone’s story and to know that we have made a difference. We are grateful for every opportunity,” Rob says.
Keeping the charity local remains important to the couple and they are always keen to hear from people willing to help - even if they’re not willing to put on the fairy wings.
And what would Anna think of everything that’s been achieved in her name?
Carole says, “I think she’d be extremely proud. And she’d say ‘Keep going Mum’. We were privileged to know Anna but she’s with us every day.”