Face-to-face with a 13-foot shark, schoolboy Calum Graham put any fear he might be feeling to one side and instead concentrated on soaking up the remarkable moment.
The creature’s sharp teeth were inches away, and Calum watched enthralled as it glided past, its black beady eye surveying the new intruder in its watery territory.
At just 11 years old, Calum might have been forgiven for being just a little wary – even scared – of the fearsome sight of not just one, but several large circling sharks.
Yet it turns out sharks hardly register on his “list of scary things to worry about”. The brave P6 schoolboy knows there are far scarier things out there – like watching your dad battle serious illness every single day, wondering if he’ll get better soon and what might happen next.
The South Queensferry Primary School pupil’s dad, Niki, has been waiting nearly two years for an organ transplant, the result of a genetic form of polycystic kidney disease (PKD) which has led to one badly affected kidney being removed and the other under attack.
Tragically, the same condition affected Niki’s father, Derek, who died last year aged just 56. Worryingly, there is a 50-50 chance that Calum may have inherited the same faulty gene.
Yet Calum has put personal fears and worries aside and launched a touching double sided personal campaign to raise money for research into his dad’s form of kidney disease and to inform others of the problems faced by PKD sufferers.
His latest fundraising effort took place on Saturday when he took a dip under the water at Deep Sea World to dive with the sharks and raise more than £500 for the Polycystic Kidney Disease Charity.
That adventure followed a much less scary cake sale at his school, which he planned and organised by himself and which raised more than £400.
He has given awareness talks to fellow pupils, explaining to them the fine detail of the genetic illness that at one point left his dad and grandfather desperately ill at the same time, side-by-side in the same hospital ward, and talking about his support for organ donation.
Niki, 36, says his son’s incredible maturity has left him humbled – and amazed. “It makes me very emotional to think of what he’s doing,” he says. “I’m so proud of him and how he is handling it.
“The way he is using the information he’s getting to raise awareness and money for research is really amazing.”
The family had been unaware of the genetic blip until Derek took ill 14 years ago. A suspected kidney stone turned out to be polycystic kidney disease – and because of the possible genetic links with the condition, Niki, then 22, was advised to undergo a scan to see if he, too, might be affected.
Although he felt perfectly fine at the time, the scan results confirmed the family’s fears.
The hereditary condition, which can lie dormant until adulthood, causes hundreds of cysts to form on the kidneys, leaving them grossly enlarged, poisoned and unable to function.
In a terrible twist, Niki’s condition suddenly kicked in dramatically two years ago, at exactly the same time as his dad’s health rapidly deteriorated. They ended up together in the same hospital ward, with Niki fighting septicaemia while Derek, seriously debilitated by the impact of a brain aneurysm – a complication of the condition – struggled with failing kidneys.
Doctors removed Niki’s worst affected kidney which had swelled to a foot long and weighed just over half a stone. He was placed on the kidney organ transplant list in November 2011 and now needs three weekly sessions of dialysis, lasting five hours each.
Derek died just two months later. “Calum showed amazing strength at that time,” recalls Niki. “He never cried in front of us and was always there, supporting us. Again, he was amazing.”
Niki says the four months he spent in hospital after losing his kidney were particularly hard – for the risk of infection meant that he couldn’t see Calum or daughter Halle, nine. “It was really, really tough for us all,” he recalls. “Halle is not as aware of it all as Calum. But the way he handled that time in particular was amazing. He just took it all in his stride.
“Once I was in hospital he started to ask a lot of questions – he wanted to know what was wrong with his dad. I had all the information in books I’d been given and he read through those even though it’s quite complicated. But he really wanted to find out more.
“Some of the horrible stuff I’ve tried to keep away from him because he is still young and some of it is really quite hard to read,” Niki adds. “But when he asks a question, it’s obvious that it’s something he’s thought long and hard about before asking. So I answer him as best I can and that’s him satisfied, he goes off then and does something else.”
Although he’s still just 11, Calum now wants to use his knowledge to educate others. “He’s done projects on it, and I was amazed when he said he wanted to talk to his class in school about it,” adds Niki, who lives with wife Jacqui, a nursery practitioner in South Queensferry. “The other kids were giving talks about football and ponies, but he stood up and said ‘My dad has this disease’ and talked about it.”
It was Calum’s own idea to dive and swim with sharks. “I was really nervous at the start, but once I got in the water I was fine,” recalls Calum. “One of the sharks came right up to me and kind of ‘sniffed me’, so it was really close up. It had really big teeth, but I didn’t think it would bite me.
“My dad likes sharks but he is too sick to do anything like dive with them, so I thought I’d do it for him.
“It’s hard that he’s not well,” he adds. “But I know about what is making him ill now and I know what is going to happen.”
Sadly, while most other youngsters his age are enjoying fun times with their dad, Calum is aware that his father’s condition means he’s often tired out and not well enough to do as much as he’d like. “It means there are times when he’s not at home because he needs dialysis that takes hours,” adds Calum. “And sometimes he is quite tired. But we still go clay pigeon shooting together and he’s teaching me a lot about how to build things. We get the tools out, but he needs me to put them away again.
“He has to watch how much he drinks every day, so I help to measure what he has and crush ice for him so it’s nice and cold.”
Niki and Jacqui believe Calum’s incredible approach to dealing with his dad’s illness is partly down to the “life skills” he’s learned at taekwon do classes with former world champion Julia Cross. He’s just one step away from black belt.
“It seems to have helped him cope with whatever is thrown at him,” adds Niki.
And they’ve decided that they won’t go ahead and have Calum or Halle tested for the faulty gene. Instead, they are hoping it may have simply skipped a generation. “What’s the benefit of knowing?” shrugs Niki, who despite his illness still manages to work full-time in administration for a scaffolding firm.
“It’s not something that would affect them right away, so it’s better not to have the test done and hope that they’re not affected. Hopefully, in the future, research and medicine will be a lot further advanced than it is at the moment.”
Meanwhile, dad Niki has nothing but praise for his son. “He’s really amazing,” he adds. “I couldn’t be more proud of him.”
• Calum Graham is raising money for Polycystic Kidney Disease research on www.justgiving.com/CalumGraham11
HUNDREDS OF SCOTS AWAIT TRANSPLANTS
POLYCYSTIC kidney disease (PKD) causes cysts to form on the kidneys.
The most common version of the disease is an inherited form called autosomal dominant polycystic kidney disease, which leads to around half patients developing kidney failure that requires dialysis or transplant by the age of 60.
The condition affects around 70,000 people in the UK, roughly one in every 800. Most do not experience kidney problems until they are aged between 30 and 50. Eventually, the kidneys can be covered with hundreds of cysts.
Calum’s dad Niki currently undergoes three five-hour long sessions of dialysis every week. He was placed on the organ transplant list two years ago.
Around 700 people in Scotland are waiting for a kidney transplant, and 4000 Scots are on dialysis. In total, there are more than 8000 people in the UK on the organ transplant list. However, there is a serious shortage of donor organs, which can mean years of waiting for some patients and others simply running out of time.
To find out more about organ donation and to join the register, go to www.organdonation.nhs.uk.
More information about PKD, visit www.pkdcharity.org.uk.