'Verity loved mischief... her diagnosis and death was a real shock, completely devastating - it changed how I think about everything'
Little Verity Young inspired many with her determination to make the most of every day, even though she was battling serious illnesses. Now her father John, who has just published his first novel, tells Judith Cole about his beautiful daughter and the charity that he and his wife Laura have established in her memory
One of the things that little Verity Young wrote before she died, aged eight, from cancer, was: "Big or small, there is always a difference only you can make." There is no doubt, then, that she would be bursting with pride at what her parents, John and Laura, have achieved since the most devastating time of their lives.
John (53), who grew up in Bangor and met Laura in Portaferry, has just published his first novel, Farewell Tour of a Terminal Optimist, to widespread acclaim, while the couple, who live near Edinburgh, have together established a charity that delivers art therapy to children like their beloved daughter.
Verity was the second of three children; Nina is now 17 years old and Isla, 11. Verity was diagnosed with lupus at the unusually young age of three but then, when she was seven, was found to have cancer.
"It was a real shock. It was completely devastating really," John says.
"They tried chemotherapy and radiotherapy for a while, which went on for over a year. We thought it had worked in September of 2009, but then the cancer came back with great ferocity and by November she was gone.
"It changes your outlook on everything. We're very fortunate with Nina and wee Isla here. They have been just wonderful and, of course, the whole thing affected them too.
"Nina knew enough of what was going on to realise that things weren't right. I'd spend a week in hospital with Verity in Glasgow and then Laura would take over, so we had this routine and Nina asked me once, 'are you and mum getting divorced?' because she never saw us together.
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"Isla was very young at the time, but she saw a lot more of Verity than she would have if Verity had been at school. And then, suddenly, Verity wasn't there one day. We thought she wouldn't understand but, a year after Verity died, Isla said, 'when's Verity coming home?'.
"We are so lucky that they're running around, very happy, positive children - Nina is doing her A-levels next year and wants to go to university, and Isla is starting secondary school."
To everyone who knew her, Verity was a joy to be around and was determined not to let her illness hold her back. Although she spent a lot of time in hospital during the six years of her illnesses, she loved being outside and taking part in all sorts of activities, and inspired everyone with her zest for life.
"Even when she got sick, we did our best to get her outside as much as we could," John says. "We carried her up mountains and took her swimming. She would never see her illness as a barrier to doing anything.
"She asked me to take her swimming with dolphins. She had tubes coming out of her chest and we even got a dry suit for her and tried to organise it, but she didn't make it."
However, one of the things Verity was able to do in hospital, and which significantly enhanced her quality of life, was drawing and painting.
"A friend, Christina, an artist, used to come to the hospital to visit Verity and used to paint with her, and Verity's attitude would change completely during these times when Christina was about," John remembers. "So we enquired into this, and found that this kind of therapy was available to people who've had trauma, and we just thought if this had been available to Verity it would have made her life so much better."
When John and Laura formed their charity to deliver art therapy to children in hospital, Verity was the inspiration behind its special name.
As John explains: "It was really important for Verity to drink a lot of liquid when she was ill. Of course you can't tell kids to keep drinking because they'll say 'I'm not thirsty', so we used to make her tea in granny's old tea set - and she loved this so much that she wouldn't take tea unless it was set up properly like a tea party. That was where the name Teapot Trust came from - this sort of rescue remedy for a sick kid. Verity was very fond of a proper cup of tea."
The charity was born in 2010 and its first art therapy service began the following year at the Royal Hospital for Sick Children in Edinburgh. It has grown each year and works in hospitals throughout Scotland, as well as London, Newcastle Upon Tyne and Liverpool. There are 12 outstanding requests from additional hospitals, and the charity hopes to start work soon in Northern Ireland once necessary administration hurdles are overcome.
"You can see the great difference art therapy makes," says John. "You have happy kids coming in to get their medication, and they respond better to their medication.
"Now and then we get a letter from parents whose child has had to have treatment and has perhaps curled up in a corner - but the one-to-one art therapy has drawn them out. If you can improve somebody's life for a period, it is so rewarding. Those letters mean everything to us."
Just like Verity's diversion into art, John found his own creative outlet during long hours in hospital by writing, and put a number of stories down on paper.
Then, a few years after his daughter died, a friend encouraged him to submit his work to the Scottish Book Trust's annual contest for new writers. He did - and, to his delight, won a prize. After putting some final touches to the book, he sent it to potential publishers, and Floris Books released it in September. And already it's gone for a second print run.
The novel, which has attracted many five star reviews on Amazon and has been hailed as a "bold and brilliant debut", takes the reader on a thrilling journey across Scotland through the eyes of young cancer sufferer Connor Lambert.
The very boy who tormented him at school, known as Skeates, accompanies him and, while it could have been a depressing tale, it is actually full of excitement, unexpected twists and turns and deeper messages throughout.
John explains: "I was keen to do something fun and uplifting. I wanted to have a main character who was struggling with health and with his family situation - I knew kids like that when I was younger, and of course my daughter was struggling with health, but I didn't want to write a health book, or a cancer book.
"There's a lot of wee Verity in Connor because she was quite mischievous. She just wanted to get on with her life and, no matter what was thrown at her, she said 'I'm going to go off and do this or that'.
"That was the starting point - someone who had the attitude that 'no matter what happens I'm going to keep doing what I can.'"
John also drew on many of his own life experiences, especially from school days in Bangor.
"Skeates and Connor have a lot in common, although they start out as enemies," he says. "One of the most fun parts in writing it was the change in Skeates from someone you don't like to someone who develops empathy for Connor. They go from hate, to mistrust, to liking each other and ultimately to the point where Connor is relying on him in the end. So the relationship changes quite dramatically through it. That's the part I enjoyed most, seeing their relationship transform.
"There are some things in the book that actually happened to me. For example, the incident in which Connor and Skeates are being chased by a group of guys and run into an alley with seemingly no way out. This happened to my friend John and me - we were chased into an alley and we thought we were done for. Then we heard these dogs behind the gate and my friend shouted 'we let the dogs out' and the other guys ran away."
John left school at the age of 16 and did various odd jobs before working as a law clerk in London, where his remit included taking statements from people who'd been arrested or charged with a criminal offence.
He enjoyed it so much that he decided to study to be a lawyer, and did so, before moving back to Northern Ireland and then to Scotland. Ironically, although he and Laura met in Portaferry, they discovered they'd lived a stone's throw from each other in London. Originally from Buxton, Derbyshire, Laura lived in Portaferry for a time with an aunt and worked at the Exploris Aquarium. She met John at a pub in the village and they were astonished to discover they'd lived in adjacent streets in Clapham.
They moved to Edinburgh to enable John to carry out research into patent law, including into erythropoietin, which stimulates the production of red blood cells, and is used to treat anaemia, but has also been adopted as a performance-enhancing drug by athletes. He fits writing around this work and his role as a Teapot Trust trustee.
"I tend to write at strange times - if I can't sleep early in the morning, or on trains," he says.
"I'm a very keen long-distance cyclist and swimmer, and it is at these times that I think - and then I try to remember when I get home what I've come up with!"
John aims to keep writing and, for the meantime, he hopes that through reading his book people will be encouraged to make the best out of every situation.
"That was Verity's attitude," he says. "Everybody feels at times that it's hard to get on with things. There's that old joke about whether your glass is half full or half empty - my dad used to say you should count yourself lucky that you had a glass.
"It's quite a brave thing to do if you are ill, to take that attitude. That's what I saw in Verity - she said, 'this is where I am, I'm going to make the most of it, and that's that'."
Floris Books is offering Belfast Telegraph readers the opportunity to buy Farewell Tour of a Terminal Optimist, by John Young, for the special price of £5.59 (a reduction of 20 per cent off the normal price of £6.99). To avail of this offer, order the book via www.discoverkelpies.co.uk using the code FT1217, which is valid until December 31, 2017. For more information on The Teapot Trust visit www.teapot-trust.org