{"id":161587,"date":"2026-04-29T17:08:47","date_gmt":"2026-04-29T16:08:47","guid":{"rendered":"https:\/\/www.kidneyresearchuk.org\/?p=161587"},"modified":"2026-06-09T13:38:26","modified_gmt":"2026-06-09T12:38:26","slug":"supporting-research-into-kidney-disease-gives-parents-hope-for-sons-future","status":"publish","type":"post","link":"https:\/\/www.kidneyresearchuk.org\/2026\/04\/29\/supporting-research-into-kidney-disease-gives-parents-hope-for-sons-future\/","title":{"rendered":"Supporting research into kidney disease gives parents hope for son\u2019s future"},"content":{"rendered":"\r\n<p>The parents of a 13-year-old boy from Cheshire are doing all they can to support\u00a0the search for new\u00a0treatment options for his rare genetic kidney disease.\u00a0\u00a0<\/p>\r\n<p>Ellis\u00a0Waters\u00a0was diagnosed with <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/alport-syndrome\/\">Alport syndrome<\/a> in 2020\u00a0and his parents, Mel and Neil, have been told that\u00a0without new treatments\u00a0his\u00a0kidneys are\u00a0likely\u00a0to fail, leaving him needing a transplant or <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/dialysis\/\">dialysis<\/a> to survive.\u00a0\u00a0<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"Ellis Waters\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/IMG_6398.jpeg\" alt=\"Ellis, in hospital bed, holding a sandwich\" width=\"1290\" height=\"1582\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"Ellis Waters\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/IMG_6398.jpeg\" alt=\"Ellis, in hospital bed, holding a sandwich\" width=\"1290\" height=\"1582\" \/><\/noscript>\r\n<figcaption>Ellis Waters<\/figcaption>\r\n<\/figure>\r\n<p>Professor Rachel Lennon, a consultant paediatric nephrologist at Royal Manchester Children&#8217;s Hospital, is treating Ellis. Rachel leads the <a href=\"https:\/\/www.kidneyresearchuk.org\/research\/information-for-researchers\/rare-and-paediatric-kidney-diseases\/alport-research-hub\/\">Alport Research Hub<\/a>\u00a0in collaboration with Professor Daniel Gale from University College London and Professor Neil Turner from the University of Edinburgh.\u200b\u00a0The Alport Research Hub,\u00a0funded by Kidney Research UK in partnership with the Stoneygate Trust, brings together leading UK and international expertise in Alport syndrome to\u00a0improve disease\u202funderstanding, enable earlier diagnosis, and support the development of targeted\u202ftreatments for people with Alport syndrome.\u00a0<\/p>\r\n<p>Mum, Mel, says: &#8220;It&#8217;s scary that currently there is no way to cure Ellis&#8217;s condition. There hasn&#8217;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.&#8221;\u00a0<\/p>\r\n<p>The family are\u00a0supporting\u00a0research by\u00a0the Alport Research Hub,\u00a0contributing Ellis&#8217;s\u00a0patient data to the\u00a0<a href=\"https:\/\/www.ukkidney.org\/rare-renal\/radar\">UK National Registry of Rare Kidney Diseases (RaDaR)<\/a>.\u00a0Having recruited\u00a0over\u00a035,000 patients,\u00a0RaDaR\u00a0is a powerful source of data\u00a0to aid research\u00a0into rare conditions such as Alport syndrome.\u00a0<\/p>\r\n<p>Mel says: &#8220;We know that the research which is happening would not be possible without funding from charities like Kidney Research UK. That&#8217;s why I&#8217;ve also spent time fundraising over the past few years. Recently I took on <a href=\"https:\/\/www.kidneyresearchuk.org\/fundraising-events\/march\/\">the March March challenge<\/a>.&#8221;\u00a0<\/p>\r\n<p>Kidney Research UK&#8217;s\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/fundraising-events\/march\/\">March\u00a0March\u00a0challenge<\/a>\u00a0invites supporters to fundraise by walking 10,000 steps a day, for 31 days across\u00a0the month of March.\u00a0\u00a0<\/p>\r\n<p>Mel says: &#8220;It\u00a0was\u00a0a challenge that pushed\u00a0me but felt\u00a0more achievable\u00a0to factor into my life, rather\u00a0than climbing a mountain or running a marathon! Ellis\u00a0was\u00a0really happy\u00a0I\u00a0took part\u00a0and it has helped us to raise awareness of his condition on top of the donations\u00a0we&#8217;re\u00a0received.&#8221;\u00a0<\/p>\r\n<h2>Fighting for a diagnosis<\/h2>\r\n<p>Ellis began\u00a0to show\u00a0signs of\u00a0being unwell\u00a0just before his\u00a0fourth\u00a0birthday, when extreme tiredness and problems with bladder control prompted a visit to the GP.\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/blood-in-urine\/\">Blood<\/a> and <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/proteinuria\/\">protei<\/a>n\u00a0were\u00a0identified\u00a0in his\u00a0urine,\u00a0and\u00a0he\u00a0was prescribed antibiotics for\u00a0a suspected infection.\u00a0When his health did not improve,\u00a0his\u00a0parents\u00a0pushed for answers.\u00a0\u00a0\u00a0<\/p>\r\n<p>Teaching assistant, Mel, says: &#8220;It took three years to get Ellis&#8217;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&#8217;s Hospital that we discovered what was really happening.\u00a0<\/p>\r\n<p>&#8220;As a parent\u00a0trying to\u00a0get to the bottom of\u00a0what was wrong, it was hard to know how much I should be questioning Ellis&#8217;s doctors. There was\u00a0a lot of self-doubt, wondering if I was overreacting, but I knew\u00a0there was more to his\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/symptoms-of-kidney-disease\/\">symptoms<\/a>\u00a0and\u00a0we had to push for his diagnosis.&#8221;\u00a0<\/p>\r\n<p>Dad,\u00a0Neil, who works as a building surveyor,\u00a0says: &#8220;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.&#8221;\u00a0<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"Mel Waters\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/Mel-with-Ellis-and-his-sister-455x500.jpeg\" alt=\"Mum, with son and daughter, on a sunny day with fields in the background\" width=\"455\" height=\"500\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"Mel Waters\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/Mel-with-Ellis-and-his-sister-455x500.jpeg\" alt=\"Mum, with son and daughter, on a sunny day with fields in the background\" width=\"455\" height=\"500\" \/><\/noscript>\r\n<figcaption>Mel with Ellis and his sister<\/figcaption>\r\n<\/figure>\r\n<h2>Protecting kidney function<\/h2>\r\n<p>Since Ellis&#8217;s diagnosis, he has been prescribed medication to try and slow the decline of his <a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/stages-of-kidney-disease\/\">kidney function<\/a>. However, over the past 18 months,\u00a0his health has worsened.\u00a0<\/p>\r\n<p>Neil says: &#8220;Unfortunately the medication is no longer having the impact we&#8217;d like, so we are hoping something new comes along. Ellis looks fit and healthy at the moment, but we can&#8217;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.\u00a0<\/p>\r\n<p>&#8220;We&#8217;re\u00a0carrying\u00a0on\u00a0and living\u00a0our lives.\u00a0We&#8217;ve\u00a0never told Ellis he\u00a0can&#8217;t\u00a0do something because of his condition.\u00a0He loves his drama and is keen on becoming an actor.\u00a0He&#8217;s\u00a0also big into his cricket. His condition\u00a0doesn&#8217;t\u00a0stop him, except when he has periods where his symptoms\u00a0impact\u00a0him\u00a0more heavily.&#8221;<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"Ellis Waters\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/IMG_6394.jpeg\" alt=\"Ellis, in his school uniform, outside hospital holding a bag of medication and giving a thumbs up\" width=\"936\" height=\"1222\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"Ellis Waters\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/IMG_6394.jpeg\" alt=\"Ellis, in his school uniform, outside hospital holding a bag of medication and giving a thumbs up\" width=\"936\" height=\"1222\" \/><\/noscript><\/figure>\r\n<p>Mel says: &#8220;People can find it hard to understand how Ellis can have such a serious condition but not be in hospital all the time. They\u00a0don&#8217;t\u00a0see how hard it can be for him to get up in the morning\u00a0because of his fatigue. It often feels like we\u00a0have to\u00a0justify his condition. My biggest bugbear is when people tell me, &#8216;He looks okay&#8217;.\u00a0They\u00a0don&#8217;t\u00a0see that his kidneys\u00a0aren&#8217;t\u00a0working.\u00a0<\/p>\r\n<p>&#8220;It has taken some time for people to understand that Ellis\u00a0doesn&#8217;t\u00a0miss school because he fancies a day off. He physically cannot get out of bed some days. His face and ankles become swollen and\u00a0he&#8217;ll\u00a0just sleep.\u00a0The prospect of kidney failure is always at the back of our minds. There are moments where you worry about\u00a0what&#8217;s\u00a0to come and how it will affect his life. Will it\u00a0impact\u00a0his GCSEs or stop him going to his school prom?\u00a0<\/p>\r\n<p>&#8220;We&#8217;re\u00a0really proud\u00a0of Ellis. He cracks on and\u00a0doesn&#8217;t\u00a0let anything phase him. As he gets\u00a0older,\u00a0he is becoming more conscious that\u00a0his life is different to his friends, but he is usually more concerned\u00a0with\u00a0styling his hair or\u00a0going for a\u00a0Subway!&#8221;\u00a0<\/p>\r\n<h2>March\u00a0March\u00a0fundraiser<\/h2>\r\n<p>Mel joined\u00a0our\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/fundraising-events\/march\/\">March\u00a0March<\/a>\u00a0for the\u00a0second time, raising funds for research into kidney disease.\u00a0\u00a0<\/p>\r\n<p>She says: &#8220;It was World Kidney Day and Ellis&#8217;s birthday in March, so it was a great time to dedicate to fundraising. It&#8217;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.\u00a0<\/p>\r\n<p>&#8220;Ellis and his classmates have also been raising awareness in their school. They recently\u00a0presented a talk about Kidney Research UK to the rest of their year group\u00a0which\u00a0was\u00a0incredible.\u00a0We&#8217;re\u00a0so proud of him.&#8221;\u00a0<\/p>\r\n<h2>Take your FREE health check today<\/h2>\r\n<p>Did you know that every day over 20 people start treatment for kidney failure?<\/p>\r\n<p>Several things can increase your risk including diabetes, high blood pressure or being overweight.<\/p>\r\n<p>Take our quick and easy online test to see if you are at risk.<\/p>\r\n<p><a href=\"https:\/\/kidneyresearchuk.org\/kidneyhealthcheck\/\" target=\"_self\"> Take kidney health check now <\/a><\/p>\r\n","protected":false},"excerpt":{"rendered":"<p>The parents of a 13-year-old boy from Cheshire are doing all they can to support\u00a0the search for new\u00a0treatment options for his rare genetic kidney disease.\u00a0\u00a0 Ellis\u00a0Waters\u00a0was diagnosed with Alport syndrome in 2020\u00a0and his parents, Mel and Neil, have been told that\u00a0without new treatments\u00a0his\u00a0kidneys are\u00a0likely\u00a0to fail, leaving him needing a transplant or dialysis to survive.\u00a0\u00a0 Ellis&hellip;<\/p>\n","protected":false},"author":3,"featured_media":161588,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[328,30],"tags":[],"class_list":["post-161587","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-alport-syndrome","category-patient-stories"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Supporting research into kidney disease gives parents hope for son\u2019s future - Kidney Research UK<\/title>\n<meta name=\"description\" content=\"The parents of 13-year-old Ellis, are doing all they can to support the search for new treatment options for his rare 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