‘I HAD FEVER, ‘STRAWBERRY TONGUE’, AND THE SKIN ON MY LIPS AND HANDS WAS PEELING OFF’: CO ANTRIM WOMAN ON RARE DISEASE

By the age of three, Lucy McAleese was dangerously ill. What began as repeated fevers and unexplained symptoms became a medical emergency that would shape the rest of her life.

Now 22 and from Ballymena, Lucy is sharing her story for the first time to raise awareness of Kawasaki disease – a rare but serious childhood illness that affects around eight in every 100,000 children under the age of five in the UK – and to highlight that heart disease is not confined to older generations.

She is also taking part in Northern Ireland Chest Heart & Stroke’s (NICHS) Red Dress Fun Run, using the event as a platform to encourage greater understanding of heart conditions among younger people.

“Kawasaki disease isn’t something most people have heard of,” Lucy says. “When I tell people I have a heart condition, they’re shocked because of my age. There’s this assumption that heart illness only affects older people, and that’s just not true.

“I want to raise awareness that there are lots of younger people living with a heart condition, and many who are undiagnosed.”

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Kawasaki disease causes inflammation of the blood vessels throughout the body and can damage the coronary arteries that supply the heart. While many children recover with prompt treatment, others – like Lucy – are left with long-term cardiac complications.

Lucy was only a toddler when symptoms first appeared. She became unwell repeatedly, with persistent fevers, a ‘strawberry tongue’ and peeling skin on her lips and hands. Initially, doctors suspected scarlet fever, but her condition did not improve.

“My mum just knew something wasn’t right,” Lucy recalls. “She kept taking me back to the doctor even though there were no clear answers. If she hadn’t kept pushing, things could have turned out very differently.”

One day Lucy became severely lethargic, prompting an urgent visit to the GP. She was rushed to Antrim Area Hospital amid fears she was going into cardiac arrest. After extensive tests, doctors diagnosed Kawasaki disease and immediately transferred her to the Royal Victoria Hospital in Belfast.

There, Lucy received intravenous immunoglobulin (IVIG) – a treatment made from donated antibodies – in an effort to reduce inflammation and prevent further damage to her heart.

“My parents were told the next 24 to 48 hours were critical because blood wasn’t getting to my heart,” she says. “That’s terrifying to hear about your child.”

Lucy spent months in hospital and was prescribed aspirin, one of the rare occasions the drug is recommended for children. Because of its blood-thinning effects, she also required additional medication and careful monitoring.

Too young to understand what was happening, Lucy nonetheless felt the impact deeply.

There were so many small things I missed out on – not being able to go on rides at Barry’s in Portrush, standing watching while everyone else had fun

Lucy McAleese

“I wasn’t allowed to do lots of normal things,” she says. “I couldn’t play outside properly, I had to avoid germs and infections, and I had to stop going to clubs and activities. Watching my siblings do things I couldn’t was really hard.”

Even returning to school was a challenge. Her skin was raw from peeling, and she had to wear white gloves to keep medicated creams in place.

“I remember being embarrassed and worrying about what people would think,” she says. “That’s something people don’t always understand – it’s not just the illness itself, it’s the emotional side too.”

For several years, Lucy’s condition stabilised, allowing her to live a more typical life. However, her health concerns are not fully behind her. She is currently awaiting a cardiology appointment after developing an irregular and often dangerously high heart rate.

“I can be lying in bed and my heart rate is 140 beats per minute,” she explains. “The doctors don’t yet know if this is linked to Kawasaki disease or something else. I’m on medication, but the waiting is hard. You just want answers.”

The uncertainty has brought back memories of her childhood hospital stays and limitations.

“My younger years were so affected by the Kawasaki disease, and I hope my future years won’t be. There were so many normal things I couldn’t do- not being allowed to play outside, not being able to interact with many people at times because of the risk of germs and infections, having to stop going to clubs and hobbies, not being able to go on any of the rides at Barry’s in Portrush and having to stand at the side and watch everyone else. All those small things stick with you.”

Lucy says it is often seeing young children now, the same age she was when diagnosed, that makes the experience hit home.

“I’m only 22 and I’ve already been through a lot,” she says. “I’ve never really talked about it before, but signing up for the Red Dress Fun Run made me realise now is the right time.”

The annual event, organised by NICHS, raises funds and awareness for chest, heart and stroke conditions. Lucy plans to walk the 5K route rather than run.

“I’m not a runner, but that’s part of the appeal of the Red Dress Fun Run, it’s for everyone no matter your age, ability, fitness level and the atmosphere at previous years events looks brilliant.”

Lucy hopes that by sharing her story she can help others recognise symptoms early and encourage people to advocate for their own health or that of their children.

“If something doesn’t feel right, keep pushing,” she says. “If my mum hadn’t, I might not be here today.”

Last year, more than 700 people took part in the Red Dress Fun Run. This year’s event takes place at Stormont Estate in Belfast on Sunday, March 22, with organisers hoping for another strong turnout.

Leigh Osborne, community and events fundraising manager at NICHS, praised Lucy for speaking out.

“We are incredibly grateful to Lucy for sharing her story and helping to raise awareness of heart conditions in young people,” she said.

“Heart disease kills nearly twice as many women in Northern Ireland as all gynaecological and breast cancers combined, and coronary heart disease remains the biggest single cause of premature death under 75.”

The 2026 event is supported by long-term corporate partners MACE and Musgrave MarketPlace. Diane Anthony from Musgrave encouraged people to get involved.

“Whether you’re taking part in memory of someone, celebrating someone living with a condition, or helping to prevent future illness, we urge people to sign up and support this vital cause,” she said.

Lucy added: “I’ve lived with this quietly for most of my life,” she says. “Now I want to help make sure other people don’t feel alone – and that more people know that heart disease can affect anyone.”

Registration for the Red Dress Fun Run on March 22, 2026 is open at www.nichs.org.uk/RedDressFunRun

2026-02-12T06:15:13Z