{"id":161323,"date":"2026-04-01T15:23:51","date_gmt":"2026-04-01T14:23:51","guid":{"rendered":"https:\/\/www.kidneyresearchuk.org\/?p=161323"},"modified":"2026-04-01T15:23:51","modified_gmt":"2026-04-01T14:23:51","slug":"mum-participates-in-kidney-research-that-could-transform-sons-future","status":"publish","type":"post","link":"https:\/\/www.kidneyresearchuk.org\/2026\/04\/01\/mum-participates-in-kidney-research-that-could-transform-sons-future\/","title":{"rendered":"Mum participates in kidney research that could transform son\u2019s future"},"content":{"rendered":"\n\n\t\t\n\t<p>Four-year-old\u00a0Liverpudlian, Theo Ofoegbu, who\u00a0lives with Down&#8217;s Syndrome,\u00a0has already faced more health\u00a0issues than most.\u00a0A\u00a0severe heart condition\u00a0and an <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/acute-kidney-injury\/\">acute kidney injury<\/a> (AKI)\u00a0have meant much of his early life has been spent in Alder Hey Children&#8217;s Hospital\u00a0with his mum, Samantha-Jane.\u00a0\u00a0<\/p>\n\t<p>She understands\u00a0Theo\u00a0will be a life-long heart and kidney patient. However,\u00a0many\u00a0questions about how\u00a0his\u00a0conditions will affect his future\u00a0remain\u00a0unanswered.\u00a0This is\u00a0partly\u00a0due to\u00a0limited\u00a0existing\u00a0research\u00a0into\u00a0AKI\u00a0in children.\u00a0<\/p>\n<p>Samantha-Jane is determined to change this by supporting the <a href=\"https:\/\/nurturebiobank.org\/\">NURTuRE kidney biobank<\/a>. This\u00a0world-unique resource\u00a0is\u00a0a growing\u00a0collection of samples and\u00a0healthcare\u00a0data generously donated by\u00a0kidney patients, which securely supports approved scientific studies. It\u00a0will accelerate research\u00a0into many areas, including AKI, with the aim of\u00a0changing lives for kidney patients and their families.\u00a0<\/p>\n<p>Samantha-Jane says: &#8220;It is uncertain whether Theo&#8217;s kidneys will decline to the point of <a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/living-with-kidney-disease\/kidney-failure\/\">kidney failure<\/a>. That causes\u00a0us\u00a0anxiety\u00a0and\u00a0is\u00a0why\u00a0research is so important, as it could\u00a0help\u00a0inform our decisions\u00a0in Theo&#8217;s treatment.\u00a0I&#8217;m\u00a0keen to support\u00a0in any way I can to\u00a0build knowledge and\u00a0provide\u00a0researchers with\u00a0real data\u00a0that can\u00a0help\u00a0them find answers.\u00a0<\/p>\n<p>&#8220;Theo is a child of African descent, who also has Down&#8217;s Syndrome and a heart condition.\u00a0He&#8217;s\u00a0a very specific\u00a0demographic.\u00a0It&#8217;s\u00a0important he is included in research and his voice is heard.\u00a0Many people from the black community do not want to\u00a0participate\u00a0in research for\u00a0real historical\u00a0reasons. However, being in medical crises has changed my perspective.\u00a0I&#8217;m\u00a0hoping our involvement\u00a0will help researchers gain a greater understanding for the next generation.&#8221;\u00a0<\/p>\n<figure itemscope itemtype=\"https:\/\/schema.org\/ImageObject\">\n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/03\/20250629_0909093-388x500.jpg\" alt=\"Close up of mum and son squishing faces together.\" height=\"500\" width=\"388\" title=\"Theo Ofoegbu\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/03\/20250629_0909093-388x500.jpg\" alt=\"Close up of mum and son squishing faces together.\" height=\"500\" width=\"388\" title=\"Theo Ofoegbu\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\n\t\t<figcaption>Theo and mum Samantha-Jane<\/figcaption>\n\t<\/figure>\n\t<h2>Being the parent of a\u00a0child\u00a0with\u00a0health\u00a0issues<\/h2>\n<p>Theo was only 18 months old when he needed open-heart surgery to treat a\u00a0form of congenital heart disease called\u00a0tetralogy of Fallot.\u00a0Although the operation was successful, it\u00a0led to\u00a0an\u00a0AKI\u00a0that\u00a0has\u00a0caused\u00a0a decline in\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/stages-of-kidney-disease\/\">kidney function<\/a>.\u00a0<\/p>\n<p>He\u00a0remains\u00a0under the care of cardiology and renal departments, needing daily medication,\u00a0regular hospital\u00a0visits\u00a0and a strict diet\u00a0to protect his heart and kidney health.\u00a0However,\u00a0there is a very real possibility that his conditions could deteriorate further.\u00a0\u00a0<\/p>\n<p>Samantha-Jane says:\u00a0&#8220;It has\u00a0been\u00a0tough. Parenthood is difficult\u00a0anyway but\u00a0having\u00a0a child with\u00a0special educational needs and medical\u00a0issues\u00a0is even harder.\u00a0It&#8217;s\u00a0difficult to describe how it feels to see your little baby with a seven-inch scar down his chest after open-heart surgery. It was traumatic and his\u00a0AKI\u00a0was a big shock.\u00a0We&#8217;d\u00a0just gone through something\u00a0massive,\u00a0and we had\u00a0a whole new condition to learn about.\u00a0<\/p>\n<p>&#8220;Despite everything,\u00a0it&#8217;s\u00a0all worth it to\u00a0be\u00a0Theo&#8217;s mum.\u00a0I hope people going through similar situations can find hope in the fact that we are still smiling and enjoying\u00a0life.\u00a0I&#8217;m\u00a0so proud of him.\u00a0He&#8217;s\u00a0so vivacious and has loads of energy.\u00a0He&#8217;s\u00a0still pre-verbal but he knows how to let you know when he wants something! He loves to kick a ball, he loves to run and he loves to explore toys and how they work.\u00a0He&#8217;s\u00a0a ball of energy and I absolutely adore him.\u00a0<\/p>\n<p>&#8220;When I see his little face, it feels so unfair that this is all happening to him. But who is it meant to happen to?\u00a0We&#8217;ve\u00a0just got to get through it and try to help others.&#8221;\u00a0<\/p>\n<p>Samantha-Jane is an independent fashion designer and was based in London before\u00a0becoming a parent.\u00a0She says: &#8220;Life\u00a0was\u00a0turned upside down, but I think it has made me a better person.\u00a0I&#8217;ve\u00a0not been able to work as much and had to move back to Liverpool to be with my mum because of the\u00a0financial impact.\u00a0Having a close-knit family has been invaluable.\u00a0We&#8217;ve\u00a0all pulled together because nothing else is as important as being there for Theo to support with his\u00a0additional\u00a0needs and hospital appointments.&#8221;\u00a0<\/p>\n<figure itemscope itemtype=\"https:\/\/schema.org\/ImageObject\">\n\t\t\t\t<img decoding=\"async\" class=\"lazyload\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/03\/20250818_171135-281x500.jpg\" alt=\"Mum and son both wearing glasses and a close up of their faces\" height=\"500\" width=\"281\" title=\"Theo Ofoegbu\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><noscript><img decoding=\"async\" class=\"lazyload\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/03\/20250818_171135-281x500.jpg\" alt=\"Mum and son both wearing glasses and a close up of their faces\" height=\"500\" width=\"281\" title=\"Theo Ofoegbu\" onerror=\"this.style.display='none'\" loading=\"lazy\" \/><\/noscript>\n\t\t<figcaption>Samantha-Jane and Theo<\/figcaption>\n\t<\/figure>\n\t<h2>Acute kidney injury causing uncertain future<\/h2>\n<p>There are many factors that can lead to AKI, and it is a complex\u00a0issue\u00a0which researchers are striving to understand better to ensure earlier <a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/about-kidney-disease\/how-is-kidney-disease-diagnosed\/\">diagnosis<\/a> and more effective treatments.\u00a0Unfortunately, for now, there\u00a0are still\u00a0many unanswered questions.\u00a0\u00a0<\/p>\n<p>Samantha-Jane says: &#8220;It preys on your mind. You\u00a0don&#8217;t\u00a0want to get to that next appointment and find out Theo&#8217;s kidney function has drastically fallen. If it\u00a0wasn&#8217;t\u00a0for how amazing the clinicians are at Alder Hey, parents like me would be in pieces.\u00a0\u00a0<\/p>\n<p>&#8220;Theo\u00a0isn&#8217;t\u00a0always able to communicate how he is being affected in the same way as other children. That makes it difficult when he experiences symptoms which are not visible.\u00a0It&#8217;s\u00a0important for us that he has regular tests to stay on top of everything. The doctors have been fantastic with him, and, if it\u00a0wasn&#8217;t\u00a0for the NHS, my child might not be alive.\u00a0<\/p>\n<p>&#8220;I&#8217;m\u00a0so glad there are people\u00a0doing research. So many people\u00a0don&#8217;t\u00a0think about their kidneys compared to their heart or other organs. When things go wrong, you realise just how important\u00a0they\u00a0are.\u00a0I feel fortunate that we can contribute to the NURTuRE kidney biobank to\u00a0support research into\u00a0AKI in children. It helps put my mind at ease about Theo&#8217;s future.\u00a0<\/p>\n<p>&#8220;I\u00a0want\u00a0him to be\u00a0able to\u00a0be his best self and be happy as he grows up.\u00a0Theo&#8217;s intellectual disability means everything is harder for him to learn, but he is learning.\u00a0I hope one day\u00a0he\u00a0is\u00a0able to\u00a0manage his everyday life with independence and understand how to look after his health. Hopefully\u00a0by that time, we will have\u00a0more answers about his\u00a0conditions.&#8221;\u00a0<\/p>\n\t<h2>Supporting research for the future\u00a0<\/h2>\n<p>Stories like Theo&#8217;s highlight why research into AKI is so important. By contributing samples and health information to\u00a0NURTuRE, researchers build a clearer picture of kidney disease and its long-term effects.\u00a0<\/p>\n<p>Through the development of dedicated AKI research cohorts,\u00a0<a href=\"https:\/\/nurturebiobank.org\/information-for-patients\/\">NURTuRE<\/a>\u00a0is bringing together detailed clinical information, biological\u00a0samples\u00a0and long-term follow-up data from patients across the UK. These cohorts will allow researchers to better understand how AKI develops, how it affects different patients over time, and why some people experience lasting kidney damage while others recover.\u00a0<\/p>\n<p>This knowledge will help develop better ways to diagnose,\u00a0treat\u00a0and prevent kidney problems in the future offering hope to children like Theo and many other families affected by kidney disease.<\/p>\n\t<h2>Kidney Community<\/h2>\n<p>A new dedicated online forum for kidney patients and carers, helping people connect\u00a0with others who might be going through similar experiences.<\/p>\n<p>Co-developed with patients and carers, Kidney Community is a\u00a0welcoming,\u00a0safe space where you can share experiences, ask questions and find information and\u00a0support.<\/p>\n\t\t\t<a href=\"https:\/\/kidneycommunity.kidneyresearchuk.org\/?utm_source=kruk&#038;utm_medium=homepage&#038;utm_campaign=feb_banner\"  target=\"_self\">\n\t\t\t\t\t\t\tVisit Kidney Community\n\t\t\t\t\t<\/a>\n\n","protected":false},"excerpt":{"rendered":"<p>Four-year-old\u00a0Liverpudlian, Theo Ofoegbu, who\u00a0lives with Down&#8217;s Syndrome,\u00a0has already faced more health\u00a0issues than most.\u00a0A\u00a0severe heart condition\u00a0and an acute kidney injury (AKI)\u00a0have meant much of his early life has been spent in Alder Hey Children&#8217;s Hospital\u00a0with his mum, Samantha-Jane.\u00a0\u00a0 She understands\u00a0Theo\u00a0will be a life-long heart and kidney patient. However,\u00a0many\u00a0questions about how\u00a0his\u00a0conditions will affect his future\u00a0remain\u00a0unanswered.\u00a0This is\u00a0partly\u00a0due to\u00a0limited\u00a0existing\u00a0research\u00a0into\u00a0AKI\u00a0in&hellip;<\/p>\n","protected":false},"author":3,"featured_media":161324,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[30],"tags":[],"class_list":["post-161323","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","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>Mum participates in kidney research that could transform son\u2019s future - Kidney Research UK<\/title>\n<meta name=\"description\" content=\"Four-year-old Theo Ofoegbu has already faced more health issues than most. 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