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Published: 00:01, 18 January 2019
| Updated: 09:42, 18 January 2019
When Dean and Emma Giles were faced with the indescribable heartache of losing their daughter Eva they were told by a doctor to “make memories”.
It was the last thing they wanted to hear, unwavering in their fight to save the life of their previously healthy little girl, who had been given a terminal diagnosis and nine months to live aged just four.
The couple clung to the hope that somehow, through pioneering treatment, Eva could be the first child ever to survive the rare and aggressive brain tumour Diffuse Intrinsic Pontine Glioma (DIPG), which affects up to 40 children in the UK each year.
But watching their daughter’s condition worsen, they knew the doctor was right and experiences would be the best gift they could give her.
With help from charities Taylor Made Dreams and the Make A Wish Foundation, they were able to take Eva and their other two children away, including a holiday to Centre Parcs and glamping in Longleat, before she died at home on April 7, 2017, aged five.
“We were able to watch her be a normal, happy child again, free from hospitals, needles and MRI scans,” said Emma. “We look back and see this made such a difference to Eva.”
The joy it brought to her and the respite it gave her siblings Rosie and Euan, who the couple admit were pulled from pillar to post, inspired the couple to buy a caravan last year and set up charity Eva’s Angels, giving families affected by childhood cancer short breaks by the seaside in Swalecliffe.
It has been now been chosen as the Kentish Gazette’s Charity of the Year for 2019.
Dean and Emma say they know first-hand how important it is for families to have that time together.
“We were visiting hospitals regularly, we were trying to raise money for Eva’s treatment - it’s stressful, exhausting and you’re spending all of your efforts trying to save your child’s life,” said Dean, 40.
“You 100% believe that that’s going to happen, even if you’re getting advice that it’s terminal and there are no survivors - you’re thinking there are always pioneering treatments happening and you have to try because she might be that first person to survive.
“For then to hear a doctor say ‘go and make memories’, you just don’t want to hear it, but the reality is they are right. When we look back at the holidays and trips, we’ve got memories we never would have had.
“It takes you out of that exhausting, dark environment of the hospital visits while you’re trying to raise money, and go to work - it put us together and allowed us to forget it.”
Dean and Emma, who live in Mickleburgh Hill with Euan, 10, and Rosie, five, used left over money from fundraising for Eva’s treatment to buy the caravan at Seaview.
“When Eva died we came to a crossroads of what we were going to do with this money and where we should donate it,” said Emma, 41.
“A flyer for Seaview Holiday Park came through the door and I had this lightbulb moment that we should buy a caravan. It’s something visible. You’re seeing what a difference to people’s lives this makes as it did to ours.
“We know what it’s like to be in this black hole of hell, to then be given a holiday.
“Also, we’ve got two other children, it’s the whole family that’s affected by the cancer diagnosis.
“This is why it’s important that the caravan is also for bereaved families. Families need to reconnect after experiencing such a loss.”
Dean says this year they hope to raise £40,000 to buy another holiday home and improve the existing one.
They are doing a number of fundraising challenges, including Dean’s 68-mile run from St George’s Hospital in London to their home in Herne Bay on April 6, two years after Eva’s death.
Poignantly, he will follow the same route made by his daughter on her final journey home.
“We want Eva’s memory to be alive forever through the charity,” Emma said. “It’s her legacy,”
More by this authorMarijke Hall