Family experience leads to PhD award
The Sutherland family has been touched by kidney disease in many ways. When Paul Sutherland, 60, was 11 years old he was diagnosed with reflux (a condition where the urine flows backwards from the bladder to the ureter and sometimes to the kidneys), but already had suffered significant kidney scarring. Shortly after his son Jamie, now 21, was born, he too was diagnosed with reflux. Then Paul’s father was diagnosed with a similar issue in his seventies.
Moved by their experiences, Paul and wife Liz, 59, who live in Surrey, have set up The Sutherland Family PhD Award with Kidney Research UK, a donation which will fund a PhD research project affiliated with Great Ormond Street Hospital.
Family history of kidney problems
Liz says, “Paul had reflux as a child but it wasn’t picked up until he was 11, and by that stage he’d lost the equivalent of a kidney in terms of function. When Jamie was born, we were living in Switzerland, where Paul was working. There, they do an ultrasound to check for hip dysplasia at six weeks, and they also picked up that Jamie’s kidneys were abnormally large.
“We got a formal diagnosis at four months, and at times were spending 40-50 hours in hospital a week with Jamie having high fevers and severe infections. We were dealing with all of this in a foreign language, without help from our families and were trying so hard for Jamie not to lose any kidney function. It felt like sand slipping through our fingers.
“At nine months they operated, and that was the best thing that could have happened.”
After the couple had returned to the UK, Jamie was treated for a minor issue at Great Ormond Street Hospital (GOSH), and monitored until he was 16. Liz describes their ongoing care for Jamie as a “security blanket”.
First-hand experience of research
She says, “We had seen first-hand the difference research had made in a lifetime, the difference between losing a kidney, and marginal scarring.”
Although Paul’s been able to function with one kidney, he’s had to take blood pressure medication which also has also affected his kidney health. He says, “I was sporty at school and used to swim and run, but I started to get blinding headaches. My blood pressure was so high, they took me to GOSH and I wasn’t able to get out of bed for a month. They didn’t have great treatment for paediatric hypertension and the tablets weren’t nice.
“In all I missed around six months of school and it was hard not being able to do the things other kids were doing.”
Later on, Liz became a trustee of Kids Kidney Research, and met kidney patients who thought if their issues had been picked up in childhood, they would have had a better quality of life. The charity funded projects at GOSH, and later merged with Kidney Research UK.
Because of their experience volunteering and fundraising for the charity and also due to Paul’s experience of having been treated at GOSH as a child, the couple decided to fund a PhD research project at the hospital.
Supporting future research
Paul says, “We wanted to give someone starting a research career, a PhD student, a helping hand. We could have supported a mature researcher, but we decided to support someone at basement level, with the hope they would become leading research fellow in the future.”
The couple were not prescriptive about what area they wanted the research to be in, but simply that it should benefit children with kidney disease, with the aim of preventing more invasive medical treatment later in life.
Liz says, “It’s all about learning more about the kidneys, what works, what doesn’t work, and we wanted it to be for researchers affiliated with GOSH as we have a strong connection there. We helped with the wording of the call out for grant applications, but we’re not scientists and not qualified to choose – it’s a rigorous process. We left the Kidney Research UK panel to pick the best research project possible.”
The charity has chosen to fund a PhD student supervised by Professor David Long, whose research project, “Using three-dimensional human vessels in a dish to understand cardiovascular disease in children with chronic kidney disease”, scored the highest in the grant round.
Cardiovascular disease is a major cause of early death in children with kidney disease and leads to damage to blood vessels, and the research will investigate what drives vascular damage in children with chronic kidney disease.
Paul says, “It would be great to meet Professor Long and the PhD student and see what a difference our funding has made to his work.
“I remember talking to Liz many years ago about things she’d like to do in the future and funding a PhD was high on her list, so now we’ve adopted her idea as a family.”
Liz adds, “We could have left money in a will, but this way we get to enjoy the process. He might not find what he’s looking for, but he’ll find something that will be useful to somebody. It’s obvious the panel felt strongly about it, and it’s great it got such a high score.”
The name of the award was important to them as it reflects how kidney disease has affected their family through the generations.
Paul says, “Our family experience is a major part of why we wanted to support this PhD. At some point, our children will have children, and perhaps someone will research something that will help them, or there will be better therapies. Then our grandchildren, and people like them, won’t even have to face this issue.”
Liz adds, “Our sons are proud of us. Jamie’s happy he got good treatment and now he doesn’t even have to think about his health, whereas his life could have been very different.”