A man from East Sussex is tackling an ultra-marathon to raise money for the charity that provided members of his family with an ‘absolute lifeline’ when their newborn son suddenly became dangerously ill with a rare condition.
Streetworks consultant Ricky Burnett, 31, from Wadhurst, East Sussex, is taking part in the Beacons Way Ultra 105km in Wales, after being inspired by his family’s difficult hospital journey, to raise vital funds for Ronald McDonald House Charities UK, a charity providing free ‘home away from home’ accommodation for families with children in hospital.
Parents Kate Langley, 36, and Charlie Langley, 34, from Eltham, Southeast London, welcomed their son Henry into the world on 2 November 2023. The following day, with all seeming well, they were discharged home to begin their new lives together. But a day later, Henry began to take a turn for the worse.
Kate said: “We were waiting to have our midwife appointment, when she called to say she was about 15 minutes away. At this point, we noticed Henry was dripping wet. He then did a shaky movement, a ‘squawky’ cry and went really cold. The midwife arrived and took his temperature, which indicated he was hyperthermic, and agreed with our plan to take him to our local hospital. We went into A&E, he warmed up a little bit and the nurses were calm and reassuring, and we thought they were going to tell us it was jaundice. The next minute, however, as we were feeding him, we heard a nurse shouting about blood sugars, and they grabbed Henry from me and just ran.
“Henry went into respiratory arrest, stopped breathing, and all we could do was sit outside the room, anxiously waiting for someone to tell us that our baby was still with us. They resuscitated him but he was still in a bad condition. I remember hearing lots of alarms going off and multiple doctors showing up. Henry began to have fits and he had to be put on a ventilator. It was absolutely horrendous, to the point where we both have PTSD to this day.”
With suspected sepsis, Henry was ‘blue lighted’ to King’s College Hospital London, requiring more specialist treatment. Sepsis was ruled out and after a broad spectrum of antibiotics, doctors were confident Henry had what is known as transient hyperinsulinism in newborns – a condition present at birth resulting in high levels of insulin being produced, affecting all areas of the body.
Kate recalled: “The hospital saved Henry’s life, and in turn, they saved us. One of the hardest parts was the fact that Henry suffered severe brain damage and we were told he would have cerebral palsy, could be blind and may need a wheelchair in the future – whilst he is thankfully not blind and, at the moment, developing in line with his peers, we still don’t know what the future will hold and it is all the unknown that is the scariest.”
Within just nine hours of leaving home, Kate and Charlie had experienced a parent’s worst nightmare and ended that day at a new hospital, in a new location, unsure of what they would do next.
Kate continued: “Henry was on the Thomas Cook Children’s Critical Care Centre and luckily there was a bedsit-style room for us to stay in, but we knew that when Henry was well enough to move to the High Dependency Unit, we’d have to hand those keys in. Thankfully, on the day that happened, we were given accommodation at Ronald McDonald House Camberwell.”
Ronald McDonald House Charities UK is an independent Charity, which operates 14 Houses across England, Wales, and Scotland, providing free ‘home away from home’ accommodation. The Houses keep families together, close to their children in hospital. They provide a place to sleep, cook and retain some sense of normal life; a lifeline for families at a very stressful time, especially when they are far from home. A Ronald McDonald House saves each family an average of £1,240 in out-of-pocket accommodation expenses.
Kate said: “When we moved into the House, we immediately felt safe and comfortable – it was like a beautiful hotel. It was exactly what we needed at the time. A place for us to sleep, eat, and relax, allowing us to look after ourselves to be in the best position to support Henry’s recovery.
“The Camberwell House gave us a much-needed sense of normality again. Simply having the facilities for us to finally cook a proper meal, after living off food brought to us by family and spending a fortune on meals from a local shop, was amazing.
“Charlie was ill at one point during our stay and had to return home, leaving me alone. Even though I was still struggling mentally, the House gave me support and comfort. I bonded with other families over our shared experiences; nobody can truly understand what you go through with a child in hospital unless they’ve experienced it firsthand. We made lifelong friends that we keep in touch with to this day.”
Henry has since come along ‘leaps and bounds’ and his parents are incredibly thankful for the support they received from Ronald McDonald House Charities UK during their most difficult time.
Kate added: “The House saved us. We wouldn’t have been able to function without it. I don’t think we even have the words to express how grateful we are for the Charity, and that is just after our short stay – I can’t imagine how families feel who need to stay long term. It’s an absolute lifeline and we’re so happy Ricky is fundraising for Ronald McDonald House Charities UK.”
Ricky, whose wife Nicole is Charlie’s cousin, will face the scenic trail of the Brecon Beacons National Park, the Beacons Way, on Saturday 27 July. Navigating from Talybont through six checkpoints, runners will progress along this epic trail, facing 3,178 metres of ascent over a 105km course.
Ricky said: “Having previously completed an ultra-marathon in April 2023 and another marathon before that, I’m looking forward to the challenge ahead. Training is in progress and the nerves are reserved for the day before. I’ll be tackling the 105km with a friend who has also done triathlons, so we’re confident we can complete the race across the Brecon Beacons National Park.
“Whenever I take part in these kind of challenge events, I’ll always try and partner up with worthy causes to raise money for charity. Taking part on behalf of Ronald McDonald House Charities UK is incredibly important to my family, knowing how special they are to Henry’s parents and how they supported them when they needed it most.”
Abigail Sainty, Community Fundraiser for Ronald McDonald House Charities UK, said: “We’re so impressed with Ricky’s ambitious 105km run on behalf of our Charity. It’s heart-warming to hear the kind words from Kate and Charlie about our Camberwell House and we’re so happy Henry is now thriving. The money raised from Ricky’s fundraising efforts will ensure that we can continue to support families like Henry’s through difficult times. Thank you to everyone involved in the fundraising and we wish Ricky and his friend the best of luck on the day!”
Ronald McDonald House Camberwell, which opened in April 2000, provides free accommodation to the families of children being treated at King’s College Hospital London. The newly refurbished House is equipped with 24 ensuite bedrooms, communal lounges and kitchens areas and a children’s play area. 230 families stayed at the House in 2022.
To donate via Ricky’s fundraiser, please visit: www.gofundme.com/f/families-of-critically-ill
To find out more about Ronald McDonald House Charities UK, visit: www.rmhc.org.uk.
