Running for a cure to my daughter’s kidney disease
The mother of an eight-year-old girl living with a rare genetic form of kidney disease will take on the TCS London Marathon this April, raising funds for research that could change her daughter’s future.
Nikki Robson, 44, is running in support of Kidney Research UK, motivated by her daughter, Chacha, who was diagnosed with nephrotic syndrome just before her seventh birthday. Without new treatments, she faces the prospect of kidney failure.
Nikki, from Whitstable in Kent, says: “Chacha is a super sweet, caring girl who isn’t afraid to get stuck into anything. It’s so hard to watch her going through this illness. It felt massively hopeless for a while, that we were just expected to wait for kidney failure, dialysis, transplants and a lifetime of immunosuppressants. Speaking with Kidney Research UK about potential groundbreaking gene therapies has given us a lot of hope that it doesn’t have to be that way for patients with this condition.
“More funding and research is still needed to transform life for Chacha and others living with kidney disease. I can’t conduct the research myself, so running the London Marathon is one way I can make a difference as part of a team of fundraisers. A lack of money should never be the reason that people are unable to receive lifechanging treatments.”
Chacha’s diagnosis
As a one-year-old, Chacha was admitted to hospital with sepsis, when a urinary tract infection went untreated, despite appointments with her GP. Doctors were concerned Chacha’s kidney health would be affected and carried out two ultrasounds. However, Nikki and Chacha’s dad, Ryan, were reassured when they were told everything was fine.
Nikki says: “It was only when Chacha had turned five that we began to see signs that, actually, she was not well. She had mild eczema, itchy skin and puffiness around her eyes. I did wonder if it was connected to her kidney health, but we were told again by her doctors that nothing was wrong. Symptoms never lasted long and were attributed to allergies.”
Ryan says: “We were passed between different clinics and doctors and felt like our concerns were not listened to for a long time. We were referred to a thyroid specialist, then to a cardiologist. It took eighteen months for anyone to identify that the problem could be related to her kidneys. A simple dipstick test showed high levels of protein in Chacha’s urine, and we were sent to hospital right away. That was when she was diagnosed with nephrotic syndrome and the whirlwind of treatment began.”
Nikki says: “We later discovered ourselves by accessing her medical records that the problem should have been identified from blood tests she’d had when she was a one-year-old. Advocating for our child in medical settings has been one of the hardest parts of our experience. Having to become an expert yourself when you’re exhausted, stressed and trying to carry on with life. You’re not always given information until you ask the right questions – but it can be hard to know what they are.”
Challenging treatments
Nephrotic syndrome is usually treated with steroids. However, this treatment is not effective in all patients. For Chacha, whose kidney disease is 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.
Nikki says: “Within days of beginning treatment, Chacha began to gain weight. We were told it was a normal reaction to steroids, but something didn’t feel right. She continued to gain fluid weight over the following weeks and our concerns were dismissed until her blood pressure rose to dangerously high levels.
“She’s a little bundle of joy, but the treatment damaged her mental health and she gained a huge amount of weight. She was a completely different child. It’s only 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. With more research and awareness for rare kidney disease, there could be more understanding and treatment options available to provide better care.”
Ryan says: “The fear of our child’s life being in danger is hard to describe. When Chacha’s blood pressure soared, she had gained five kilograms of fluid and we were transferred to Evelina London Children’s Hospital – a two-hour drive from home. I had to travel back and forth to look after our son, Ziggy, hoping that Chacha’s condition didn’t worsen while I was away.
"Her specialist consultant is fantastic, but we weren’t under her care until several months after diagnosis. We wonder if we’d seen her earlier on, whether we could have avoided a lot of the serious problems caused by Chacha’s late diagnosis and initial treatment. That would have been lifechanging.
“Kidney disease flipped our lives upside down. We were an easy-going family who 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. Chacha’s illness changed the dynamic completely. You can take a lot for granted in life, especially your health. It has been important for us to have perspective and be grateful for what we do have. Some families we met in hospital rarely even get to spend time at home.
“We don’t know what the future holds, but we want to make sure we make every moment together count. We can’t just wait for a cure before we continue finding joy in life. We’re currently converting an old van into a camper so we can head off on a road trip to celebrate ‘living’ in spite of kidney disease with a summer of adventure. We’re documenting our journey on our Instagram page @therobsonfamily.
Nikki adds: “We try hard to turn everything into a positive. We want to take all the negative things that have happened and use that to improve things for other people. It took a long time for Chacha to be diagnosed and a lot of anguish with her treatment before we arrived where we are today. So much more can be done to improve care for patients with rare kidney diseases and we’re trying to contribute, adding a silver lining to our experience.”
Running the London Marathon
On Sunday 26 April, Nikki will join more than 50 runners fundraising for Kidney Research UK at the TCS London Marathon.
Nikki says: “Running has helped me manage my mental health at a difficult time. I applied for the London Marathon to keep me motivated but never expected to get a place! When I received that email, I thought ‘oh no, what have I done?’. I’m really excited now though.
“Ryan, Chacha and Ziggy will be cheering me on, and I think it will be an emotional day. I know someone else running has a similar experience to ours with her son. It’ll be special to run alongside other people inspired by the same cause. We all have our own stories.”
Ryan will take on his own fundraising feats later in the year, joining the London to Brighton cycle in June and planning a personal cycling challenge in his hometown.
Nikki says: “If researchers and policymakers can find solutions supported by our story and fundraising, we hope other people won’t have to go through what we have.”
Support Nikki’s fundraising: Kidney Research UK: TCS London Marathon 2026
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Every £ counts towards transforming treatments for people living with kidney disease.