A Fenham family took part in a world-first medical trial - and not only have they helped break new scientific ground, but it's finally given them peace of mind over an inherited genetic disease which has followed them for generations.
Terri Hedley's dad Leslie has a life-long history of high blood pressure which has caused kidney failure. At 63, he has so far had two kidney transplants, while his father, brother and uncle also suffered from the same rare genetic condition.
Terri has the same issue too - and the family were concerned that her daughter Katie might be similarly affected.
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After being asked to take part in a ground-breaking trial which saw whole genome sequencing used to test for genetic diseases, the Hedleys have discovered that Katie does not have the gene in question.
Prof John Sayer is the Freeman Hospital consultant and Newcastle Uni professor who has treated the family for several years. He explained how the study had made a huge difference to global medicine.
"When it was convened it wasn't possible to have a diagnostic test which sequenced the whole genome," he said.
"We would do small tests, small gene panels, and the journey to a diagnosis could take years. This means there's now a test which allows a lot of genes to be looked at in a short time."
Prof Sayer said the way the Hedley family have benefited is a good example of how the new technology will transform lives.
He said: "With the Hedleys, we knew there was a problem. Numerous family members have have needed transplants after kidney failure. This makes a massive difference for them. They know exactly what's wrong, and we were also able to establish Katie is clear of the gene.
"The criteria was that the doctor thought there was a rare genetic condition. When you group these rare diseases together, they're not that rare actually.
"One in 17 people will have one, that's quite a big number. These patients require lots of resources, particularly when they don't have a precise diagnosis. That's lots of tests looking for a diagnosis while someone can become very unwell."
Terri Hedley, who works in the NHS as a healthcare assistant, explained that, though the testing had come too late to help her father, it lifted a burden from the family.
She said: "We were asked by Prof Sayers - who knows our family incredibly well - if we would be part of the study. I had actually pretty much forgotten about it, it was just a blood test.
"I was worried about her having a family.
"Everyone in our family is worried about kidneys. So it is great to think that she won't need one.
“I wanted to be part of it for the benefit of my daughter, and it was such a relief when we found out that she did not have the same rare kidney disease as myself and other family members.
"We were so worried that Katie would have to go through what we have - to be told that this is not the case was fantastic news."
Terri said she felt the family were incredibly lucky to live in Newcastle and be able to be involved.
Terri explained that in the past, with the number of family members to suffer kidney problems, there has always been worry as to who might need to donate an organ.
She said Katie was both a student and working as a veterinary assistant and that it was great that she would not need to worry about this.
"It's simply not having the worry. I've been told that the gene tends to manifest and cause problems when you're in your 20s, so it's nice to know this isn't going to happen to Katie.
"I'm an only child and Katie's my only child so now we know the gene stops here when it comes to our family!"
People "should be very proud of our NHS"
Prof Sayer said the research highlighted that people "should be very proud of our NHS".
He added: "This study allows any hospital doctor to order a genetic test and get an answer for any patients they are unsure about. We are so much more advanced in this kind of thing than any other part of the world."
The results of the pilot study were published in the New England Journal of Medicine. Focusing on rare undiagnosed diseases, researcher analysed the genes of 4,660 people from 2,183 families who were early members of the 100,000 Genomes Project.
The study has found that genome sequencing found a diagnosis for a quarter of patients. This is across a wide variety of conditions including intellectual disability, and vision and hearing disorders
The Newcastle-based Wellcome Centre for Mitochondrial Research was also involved and Professor Gráinne Gorman explained it had also brought huge progress in treating mitochondrial disease - which can cause numerous chronic but difficult to diagnose symptoms.
She said: "We would like to thank our patients for their important contribution to the study. This project has confirmed that mitochondrial disease is more common than previously thought and supports our commitment to continue our research towards finding a cure."
The study was led by Genomics England and Queen Mary University, with Newcastle University one of the main institutions involved in recruiting patients.
