{"id":161570,"date":"2026-04-17T17:26:31","date_gmt":"2026-04-17T16:26:31","guid":{"rendered":"https:\/\/www.kidneyresearchuk.org\/?p=161570"},"modified":"2026-04-20T09:41:53","modified_gmt":"2026-04-20T08:41:53","slug":"running-for-a-cure-to-my-daughters-kidney-disease","status":"publish","type":"post","link":"https:\/\/www.kidneyresearchuk.org\/2026\/04\/17\/running-for-a-cure-to-my-daughters-kidney-disease\/","title":{"rendered":"Running for a cure to my daughter\u2019s kidney disease"},"content":{"rendered":"\r\n<p>The mother of an\u00a0eight-year-old<b>\u00a0<\/b>girl\u00a0living with a rare\u00a0genetic\u00a0form of kidney disease\u00a0will take on the <a href=\"https:\/\/www.kidneyresearchuk.org\/fundraising-events\/london-marathon\/\">TCS London Marathon<\/a> this April, raising funds for research that could change her daughter&#8217;s future.\u00a0\u00a0<\/p>\r\n<p>Nikki Robson, 44,\u00a0is running in support of Kidney Research UK,\u00a0motivated by her daughter, Chacha, who\u00a0was diagnosed with\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/idiopathic-nephrotic-syndrome\/\">nephrotic syndrome<\/a> just before her seventh birthday.\u00a0Without new treatments,\u00a0she faces the prospect of <a href=\"https:\/\/www.kidneyresearchuk.org\/kidney-health-information\/living-with-kidney-disease\/kidney-failure\/\">kidney failure<\/a>.\u00a0<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"The Robson Family\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/20240210_142034-scaled.jpg\" alt=\"Mum, dad and small son and little girl taking a family selfie while out on a walk\" width=\"2560\" height=\"1920\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"The Robson Family\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/20240210_142034-scaled.jpg\" alt=\"Mum, dad and small son and little girl taking a family selfie while out on a walk\" width=\"2560\" height=\"1920\" \/><\/noscript>\r\n<figcaption>The Robson Family<\/figcaption>\r\n<\/figure>\r\n<p>Nikki, from Whitstable in Kent, says:\u00a0&#8220;Chacha is a super sweet, caring girl who\u00a0isn&#8217;t\u00a0afraid to get stuck into anything.\u00a0It&#8217;s\u00a0so hard to watch her going through this illness.\u00a0It felt massively hopeless for a\u00a0while, that we were just\u00a0expected to\u00a0wait for kidney failure, <a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/dialysis\/\">dialysis<\/a>,\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/transplantation\/\">transplants<\/a>\u00a0and a lifetime of immunosuppressants.\u00a0Speaking with Kidney Research UK\u00a0about potential groundbreaking gene therapies\u00a0has given us a lot of hope\u00a0that it\u00a0doesn&#8217;t\u00a0have to be that way for patients with this condition.\u00a0<\/p>\r\n<p>&#8220;More funding and research\u00a0is\u00a0still\u00a0needed\u00a0to transform life for Chacha and others living with kidney disease.\u00a0I\u00a0can&#8217;t\u00a0conduct the research myself, so running\u00a0the London Marathon is one way\u00a0I can make a difference\u00a0as part of a team of fundraisers.\u00a0A lack of money should never be the reason that people are unable to receive lifechanging treatments.&#8221;\u00a0<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"Chacha Robson\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/20241113_100738-scaled.jpg\" alt=\"Chacha, in a hospital bed holding up a medal\" width=\"1920\" height=\"2560\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"Chacha Robson\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/20241113_100738-scaled.jpg\" alt=\"Chacha, in a hospital bed holding up a medal\" width=\"1920\" height=\"2560\" \/><\/noscript>\r\n<figcaption>Chacha Robson<\/figcaption>\r\n<\/figure>\r\n<h2>Chacha&#8217;s diagnosis<\/h2>\r\n<p>As a one-year-old, Chacha was admitted to hospital with sepsis,\u00a0when\u00a0a\u00a0urinary tract\u00a0infection\u00a0went untreated,\u00a0despite appointments\u00a0with her\u00a0GP.\u00a0Doctors were concerned Chacha&#8217;s kidney health would be affected\u00a0and carried out two ultrasounds. However, Nikki and\u00a0Chacha&#8217;s dad,\u00a0Ryan,\u00a0were\u00a0reassured when they were told\u00a0everything was fine.\u00a0\u00a0<\/p>\r\n<p>Nikki says: &#8220;It was only when Chacha had turned five that\u00a0we began to see\u00a0signs that,\u00a0actually,\u00a0she\u00a0was not well.\u00a0She had\u00a0mild\u00a0eczema, itchy\u00a0skin\u00a0and puffiness around her eyes.\u00a0I did wonder if it was connected to her kidney health, but we were told again by her doctors that nothing was wrong.\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/symptoms-of-kidney-disease\/\">Symptoms<\/a> never lasted long\u00a0and were attributed to\u00a0allergies.&#8221;\u00a0<\/p>\r\n<p>Ryan says: &#8220;We were passed between different clinics\u00a0and doctors\u00a0and\u00a0felt like our concerns were not listened to for a long time. We were referred to a thyroid specialist, then\u00a0to a cardiologist. It took eighteen months for anyone to\u00a0identify\u00a0that the problem could be related to her kidneys.\u00a0A\u00a0simple dipstick test showed\u00a0high levels\u00a0of protein in Chacha&#8217;s\u00a0urine,\u00a0and we were sent to hospital right away. That was when she was diagnosed with nephrotic syndrome and the whirlwind of treatment began.&#8221;\u00a0<\/p>\r\n<p>Nikki says: &#8220;We\u00a0later discovered ourselves by accessing her medical records\u00a0that\u00a0the problem should have been\u00a0identified\u00a0from blood tests\u00a0she&#8217;d\u00a0had when she was a one-year-old.\u00a0Advocating for our child in medical settings has been one of the hardest parts of our experience. Having to become an expert yourself when\u00a0you&#8217;re\u00a0exhausted, stressed and trying to carry on with life.\u00a0You&#8217;re\u00a0not always given information until you ask the right questions &#8211; but it can be hard to know what they are.&#8221;<\/p>\r\n<h2>Challenging treatments<\/h2>\r\n<p>Nephrotic syndrome\u00a0is usually\u00a0treated with steroids. However, this\u00a0treatment is not effective in all patients. For Chacha, whose\u00a0kidney disease\u00a0is caused by problems in the NPHS2 gene and which turned out to be steroid-resistant, being treated with steroids and nephrotoxic medication for several months caused significant problems.\u00a0<\/p>\r\n<p>Nikki says: &#8220;Within days\u00a0of beginning treatment,\u00a0Chacha began to gain weight. We were told it was a normal reaction to\u00a0steroids,\u00a0but\u00a0something\u00a0didn&#8217;t\u00a0feel right. She continued to gain fluid weight over the following\u00a0weeks\u00a0and our concerns were dismissed until her blood pressure rose to dangerously\u00a0high levels.\u00a0<\/p>\r\n<p>&#8220;She&#8217;s\u00a0a little bundle of joy,\u00a0but the treatment damaged her mental\u00a0health\u00a0and she gained a huge amount of weight. She was a completely different child.\u00a0It&#8217;s\u00a0only now, two years since she stopped taking steroids and after an incredible amount of nutritional work as a family, that we finally have our daughter back.\u00a0With more research\u00a0and awareness for rare kidney disease, there could be more understanding and treatment options available to provide better care.&#8221;\u00a0<\/p>\r\n<p>Ryan says: &#8220;The fear of our child&#8217;s life being in danger is hard to describe. When Chacha&#8217;s\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/conditions-symptoms\/blood-pressure\/\">blood pressure<\/a> soared,\u00a0she had gained five kilograms of\u00a0fluid\u00a0and\u00a0we were transferred to Evelina London Children&#8217;s Hospital &#8211; a\u00a0two-hour\u00a0drive from home.\u00a0I had to travel back and forth to look after our son, Ziggy, hoping\u00a0that\u00a0Chacha&#8217;s condition\u00a0didn&#8217;t\u00a0worsen\u00a0while I was away.\u00a0<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"Chacha Robson\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/20240425_174447-scaled-e1776424326628.jpg\" alt=\"Chacha, smiling to the camera while in her hospital bed\" width=\"1920\" height=\"1694\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"Chacha Robson\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/20240425_174447-scaled-e1776424326628.jpg\" alt=\"Chacha, smiling to the camera while in her hospital bed\" width=\"1920\" height=\"1694\" \/><\/noscript>\r\n<figcaption>Chacha during a visit to hospital<\/figcaption>\r\n<\/figure>\r\n<p>&#8220;Her specialist consultant is fantastic, but we weren&#8217;t under her care until several months after diagnosis. We wonder if we&#8217;d seen her earlier on, whether we could have avoided a lot of the serious problems caused by Chacha&#8217;s late diagnosis and initial treatment. That would have been lifechanging.\u00a0<\/p>\r\n<figure><img decoding=\"async\" class=\"lazyload\" title=\"The Robson Family\" src=\"data:image\/gif;base64,R0lGODlhAQABAIAAAAAAAP\/\/\/yH5BAEAAAAALAAAAAABAAEAAAIBRAA7\" data-src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/20260303_165111-scaled.jpg\" alt=\"The four members of the Robson family, sitting in the back of their empty van\" width=\"1733\" height=\"2560\" \/><noscript><img decoding=\"async\" class=\"lazyload\" title=\"The Robson Family\" src=\"https:\/\/www.kidneyresearchuk.org\/wp-content\/uploads\/2026\/04\/20260303_165111-scaled.jpg\" alt=\"The four members of the Robson family, sitting in the back of their empty van\" width=\"1733\" height=\"2560\" \/><\/noscript>\r\n<figcaption>The Robson&#8217;s with their family camper van<\/figcaption>\r\n<\/figure>\r\n<p>&#8220;Kidney disease\u00a0flipped our lives upside down. We were an easy-going family\u00a0who travelled a lot. We spent many years in Thailand when the children were younger and have since spent a year housesitting and travelling around the UK and Europe.\u00a0Chacha&#8217;s illness changed the\u00a0dynamic\u00a0completely.\u00a0You can take a lot for granted in life, especially your health. It has been important for us to have perspective and be\u00a0grateful for what we do have.\u00a0Some families we met in hospital rarely\u00a0even\u00a0get\u00a0to spend time\u00a0at home.\u00a0<\/p>\r\n<p>&#8220;We\u00a0don&#8217;t\u00a0know what the future holds, but we want to make sure we\u00a0make every moment together count. We\u00a0can&#8217;t\u00a0just wait for\u00a0a cure before we continue finding joy in life.\u00a0We&#8217;re\u00a0currently converting an old van into a camper so we can head off on a road trip\u00a0to celebrate &#8216;living&#8217;\u00a0in spite of\u00a0kidney disease with a summer of adventure.\u00a0We&#8217;re\u00a0documenting our journey on our Instagram page\u00a0<a href=\"https:\/\/www.instagram.com\/therobsonfamily\/\">@therobsonfamily<\/a>.\u00a0<\/p>\r\n<p>Nikki adds: &#8220;We try hard to turn everything into a positive. We want to take all the negative things that have happened and use that to\u00a0improve things for other people.\u00a0It\u00a0took a long time\u00a0for Chacha to be diagnosed and a lot of anguish with her treatment before we arrived where we are today.\u00a0So much more can be done to improve care for patients with rare kidney diseases and\u00a0we&#8217;re\u00a0trying to contribute,\u00a0adding\u00a0a silver\u00a0lining\u00a0to our experience.&#8221;<\/p>\r\n<h2>Running the London Marathon<\/h2>\r\n<p>On Sunday 26 April, Nikki will join more than 50 runners fundraising for Kidney Research UK at the TCS\u00a0London Marathon.\u00a0<\/p>\r\n<p>Nikki says: &#8220;Running has helped me manage my mental health at\u00a0a\u00a0difficult time.\u00a0I applied for\u00a0the\u00a0London Marathon\u00a0to\u00a0keep me motivated but\u00a0never expected to get a place! When I received that\u00a0email, I thought &#8216;oh no, what have I done?&#8217;.\u00a0I&#8217;m\u00a0really excited\u00a0now though.\u00a0<\/p>\r\n<p>&#8220;Ryan,\u00a0Chacha\u00a0and Ziggy will be cheering me\u00a0on,\u00a0and I think it will be an emotional day.\u00a0I know someone else running has a similar experience to ours with her son.\u00a0It&#8217;ll\u00a0be special to run alongside other people inspired by the same cause. We all have our own stories.&#8221;\u00a0<\/p>\r\n<p>Ryan will take on his own fundraising\u00a0feats\u00a0later in the year,\u00a0joining the\u00a0<a href=\"https:\/\/www.kidneyresearchuk.org\/fundraising-events\/london-to-brighton-cycle\/\">London to Brighton cycle<\/a>\u00a0in June and\u00a0planning\u00a0a personal\u00a0cycling challenge in\u00a0his hometown.\u00a0\u00a0<\/p>\r\n<p>Nikki says: &#8220;If researchers and policymakers can find solutions supported by our story and fundraising, we hope other people won&#8217;t have to go through what we have.&#8221;\u00a0\u00a0<\/p>\r\n<p>Support Nikki&#8217;s fundraising:\u00a0<a href=\"https:\/\/2026tcslondonmarathon.enthuse.com\/pf\/nikki-robson\">Kidney Research UK: TCS London Marathon 2026<\/a>\u00a0<\/p>\r\n<h2>Why not make a donation now?<\/h2>\r\n<p>Every \u00a3 counts towards transforming treatments for people living with kidney disease.<\/p>\r\n<p><a href=\"https:\/\/kidneyresearchuk.org\/support\/donate\/\" target=\"_self\"> Donate now <\/a><\/p>\r\n","protected":false},"excerpt":{"rendered":"<p>The mother of an\u00a0eight-year-old\u00a0girl\u00a0living with a rare\u00a0genetic\u00a0form of kidney disease\u00a0will take on the TCS London Marathon this April, raising funds for research that could change her daughter&#8217;s future.\u00a0\u00a0 Nikki Robson, 44,\u00a0is running in support of Kidney Research UK,\u00a0motivated by her daughter, Chacha, who\u00a0was diagnosed with\u00a0nephrotic syndrome just before her seventh birthday.\u00a0Without new treatments,\u00a0she faces the&hellip;<\/p>\n","protected":false},"author":3,"featured_media":161571,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[31,30],"tags":[76,143],"class_list":["post-161570","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-fundraising","category-patient-stories","tag-london-marathon","tag-nephrotic-syndrome"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Running for a cure to my daughter\u2019s kidney disease - Kidney Research UK<\/title>\n<meta name=\"description\" content=\"Nikki Robson, mum of girl living with a rare kidney disease will run the London Marathon to fundraise to change her daughter\u2019s future.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, 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