Running the London Marathon for wife and daughter affected by rare disease
A young father is running the London Marathon to fund research into kidney health, after a rare auto-immune disease left his wife needing dialysis and caused the premature birth of their daughter.
Leo Elbourne, 31 from London, is determined to fund life-changing research for his family and others, having experienced the devastation caused by kidney failure.
His wife, Chevonne, was diagnosed with a rare auto-immune condition – dense deposit disease – in 2019 and now needs dialysis while she waits for a transplant, after her first transplanted kidney was damaged during pregnancy. The condition caused pre-eclampsia, meaning that her blood pressure was dangerously high and their daughter was born prematurely at 28 weeks.
She is now 17 months old, but not yet out of the woods, and nor is Chevonne.
Leo, a content creator for Bible Matters, a Christian charity, says: “Chevonne dialyses at home, while our daughter needs a ventilator to support her breathing. Our bedroom is like a hospital. It has been incredibly hard, but we are so thankful to have our child.
"We hope Chevonne will have her second transplant soon and we can enjoy a normal life.
“It’s really encouraging to see major research taking place in kidney medicine, and we’ve already benefitted from breakthroughs. I’m running the London Marathon to raise money for Kidney Research UK to try and secure a better future for kidney patients.”
Chevonne’s diagnosis
In 2018, with their wedding on the horizon, Leo and Chevonne had no idea the tiredness and bouts of sickness she was experiencing were signs of a devastating rare disease. Doctors could not identify what was wrong and it was only when Chevonne was treated in A&E that the couple began to get answers.
Leo says: “Chevonne had been experiencing swelling and during one particularly bad episode she was having difficulty breathing. Doctors in A&E discovered her kidney function had dropped to just 15%.
“After a few weeks in hospital, she was diagnosed with a rare auto-immune condition. It was a huge shock. Sadly, Chevonne had to give up her work as a graphic designer to focus on her health.”
Chevonne was prescribed medication to try and manage her condition. However, her health rapidly declined.
Leo says: “We’re thankful our wedding day was a really happy one. Chevonne was well enough to walk down the aisle and so many loved ones were there to celebrate with us. Unfortunately, just after our return from honeymoon, her health became critical.
“I woke in the night to find Chevonne having a seizure and immediately called for an ambulance. She was placed in intensive care and put into an induced coma for two days. Her kidneys had failed and she needed to start dialysis. It was a totally new life, one we had not envisaged or prepared for.”
Receiving a transplant
At the beginning of 2020, Chevonne received a transplant from her dad, Mark.
Leo says: "Within days she was feeling significantly better. It was amazing. Despite the stresses of the pandemic, that was a joyful time for us.
“For a few years things felt normal, and it was wonderful. Chevonne started working again and we were living a normal life, which is a great privilege. Although she needed IV infusions to treat a flare up of her condition in 2023, this was successful and we kept moving forwards.
“Life with a new kidney opened lots of possibilities for us, including the option to try to start a family. When Chevonne was first diagnosed, we didn’t know whether we would be able to have children. However, in discussion with our consultant, we assessed the risks and made the decision to try for a baby.”
Pregnancy and kidney disease
In 2024, Leo and Chevonne were able to share the wonderful news that they were expecting their first child.
Leo says: “It was amazing and everything was going really well until halfway through the pregnancy, when a blood test led us to discover that Chevonne had pre-eclampsia.”
Autoimmune conditions and kidney disease are two factors that can increase a person's chance of developing pre-eclampsia – a condition that can lead to serious complications for both mother and baby.
Leo says: “Chevonne was admitted to hospital for monitoring until it became necessary to deliver our baby at just 28 weeks. It was terrifying. Our daughter was about the size of my hand. She had trouble breathing and was moved to neo natal intensive care.
“For Chevonne, her transplanted kidney had been severely damaged by pre-eclampsia. We hoped with treatment that her kidney function would recover, but unfortunately the damage was irreversible. She became increasingly tired and it was hard to manage her health problems while also being on the neo-natal ward every day.
“Our daughter remained in hospital for seven months. In July 2025, she was discharged and we were able to provide her necessary breathing support at home. That was one of the happiest days of our lives. However, only a week later Chevonne was told she needed to return to dialysis. We now sleep at night between the colossal dialysis machine on our left, and our daughter’s ventilator on our right.”
“It has been a very difficult time, particularly for Chevonne who balances her dialysis with caring for our daughter. Additionally, Chevonne’s mum passed away recently after a long battle with cancer. We had to navigate Chevonne’s intensive treatment and our daughter’s healthcare with making sure we could spend time together before she died. Thankfully, Chevonne was able to be there at the end of her life.”
Several of Chevonne’s family and friends, including Leo, have been tested to donate a kidney. Although none have been a direct match, they have joined the UK Living Kidney Sharing Scheme. Donor and recipients join with other pairs and find a match for transplantation.
Leo says: “I hope I get to donate my kidney. I want to be able to show people the wonder of saving someone’s life through donation, as well as enjoy a normal life after doing it. I’d love to run the marathon this year, donate my kidney and then run again next year to prove it!”
Running the London Marathon
On Sunday 26 April, Leo will join more than 50 runners fundraising for Kidney Research UK at the TCS London Marathon.
He says: “I want to support the extraordinary research that is happening. There is real optimism about the progress that is being made in kidney health and transplantation.
“Marathon training is tough, especially juggling it with looking after Chevonne and our daughter. However, I can’t wait to complete the race and meet them at the finish line to celebrate.”
Support Leo’s fundraising: Kidney Research UK: Leo (hopefully) runs a marathon
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