Supporting research into kidney disease gives parents hope for son’s future
The parents of a 13-year-old boy from Cheshire are doing all they can to support the search for new treatment options for his rare genetic kidney disease.
Ellis Waters was diagnosed with Alport syndrome in 2020 and his parents, Mel and Neil, have been told that without new treatments his kidneys are likely to fail, leaving him needing a transplant or dialysis to survive.
Professor Rachel Lennon, a consultant paediatric nephrologist at Royal Manchester Children’s Hospital, is treating Ellis. Rachel leads the Alport Research Hub in collaboration with Professor Daniel Gale from University College London and Professor Neil Turner from the University of Edinburgh. The Alport Research Hub, funded by Kidney Research UK in partnership with the Stoneygate Trust, brings together leading UK and international expertise in Alport syndrome to improve disease understanding, enable earlier diagnosis, and support the development of targeted treatments for people with Alport syndrome.
Mum, Mel, says: “It’s scary that currently there is no way to cure Ellis’s condition. There hasn’t been enough research into Alport syndrome, particularly in children, and that makes it difficult to predict how his kidney function will change. Seeing the difference that researchers like Professor Lennon are trying to make for patients like Ellis gives us hope that new treatments can be found.”
The family are supporting research by the Alport Research Hub, contributing Ellis’s patient data to the UK National Registry of Rare Kidney Diseases (RaDaR). Having recruited over 35,000 patients, RaDaR is a powerful source of data to aid research into rare conditions such as Alport syndrome.
Mel says: “We know that the research which is happening would not be possible without funding from charities like Kidney Research UK. That’s why I’ve also spent time fundraising over the past few years. Recently I took on the March March challenge.”
Kidney Research UK’s March March challenge invites supporters to fundraise by walking 10,000 steps a day, for 31 days across the month of March.
Mel says: “It was a challenge that pushed me but felt more achievable to factor into my life, rather than climbing a mountain or running a marathon! Ellis was really happy I took part and it has helped us to raise awareness of his condition on top of the donations we’re received.”
Fighting for a diagnosis
Ellis began to show signs of being unwell just before his fourth birthday, when extreme tiredness and problems with bladder control prompted a visit to the GP. Blood and protein were identified in his urine, and he was prescribed antibiotics for a suspected infection. When his health did not improve, his parents pushed for answers.
Teaching assistant, Mel, says: “It took three years to get Ellis’s diagnosis of Alport syndrome. It was very stressful going back and forth with constant trips to the GP trying to figure out what was wrong. Doctors mistakenly believed Ellis had a bacterial infection and it was only when we were referred on to Royal Manchester Children’s Hospital that we discovered what was really happening.
“As a parent trying to get to the bottom of what was wrong, it was hard to know how much I should be questioning Ellis’s doctors. There was a lot of self-doubt, wondering if I was overreacting, but I knew there was more to his symptoms and we had to push for his diagnosis.”
Dad, Neil, who works as a building surveyor, says: “When we finally received his diagnosis after years of searching for answers, there was a sense of relief. However, that was short-lived when we began to learn more about his condition.”
Protecting kidney function
Since Ellis’s diagnosis, he has been prescribed medication to try and slow the decline of his kidney function. However, over the past 18 months, his health has worsened.
Neil says: “Unfortunately the medication is no longer having the impact we’d like, so we are hoping something new comes along. Ellis looks fit and healthy at the moment, but we can’t say with any certainty how much longer that will be the case. We are just trying to take steps to protect his kidneys for as long as possible.
“We’re carrying on and living our lives. We’ve never told Ellis he can’t do something because of his condition. He loves his drama and is keen on becoming an actor. He’s also big into his cricket. His condition doesn’t stop him, except when he has periods where his symptoms impact him more heavily.”
Mel says: “People can find it hard to understand how Ellis can have such a serious condition but not be in hospital all the time. They don’t see how hard it can be for him to get up in the morning because of his fatigue. It often feels like we have to justify his condition. My biggest bugbear is when people tell me, ‘He looks okay’. They don’t see that his kidneys aren’t working.
“It has taken some time for people to understand that Ellis doesn’t miss school because he fancies a day off. He physically cannot get out of bed some days. His face and ankles become swollen and he’ll just sleep. The prospect of kidney failure is always at the back of our minds. There are moments where you worry about what’s to come and how it will affect his life. Will it impact his GCSEs or stop him going to his school prom?
“We’re really proud of Ellis. He cracks on and doesn’t let anything phase him. As he gets older, he is becoming more conscious that his life is different to his friends, but he is usually more concerned with styling his hair or going for a Subway!”
March March fundraiser
Mel joined our March March for the second time, raising funds for research into kidney disease.
She says: “It was World Kidney Day and Ellis’s birthday in March, so it was a great time to dedicate to fundraising. It’s tiring tackling the 10,000 steps every day but really worthwhile. Sharing our story is helping to educate people about kidney disease and what it means for our lives.
“Ellis and his classmates have also been raising awareness in their school. They recently presented a talk about Kidney Research UK to the rest of their year group which was incredible. We’re so proud of him.”
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