Ballymena woman shares powerful story of living with rare childhood heart disease

Lucy McAleese was diagnosed with Kawasaki disease when she was a toddler. The disease is rare, affecting around 8 in every 100,000 children under the age of 5 in the UK.

A young woman from Ballymena is speaking publicly for the first time about growing up with a rare and potentially life-threatening heart condition, in a bid to raise awareness that heart disease does not only affect older people.

Lucy McAleese, 22, has lived with Kawasaki disease since she was a toddler — a rare illness that affects around eight in every 100,000 children under the age of five in the UK.

Now, during Heart Month (February), she has decided to share her story while preparing to take part in Northern Ireland Chest Heart & Stroke’s (NICHS) Red Dress Fun Run.

Kawasaki disease causes inflammation of blood vessels throughout the body and can damage the arteries supplying the heart, increasing the risk of long-term cardiac complications.

Lucy said:

“I have lived with Kawasaki disease since I was a toddler. The disease causes swelling of the blood vessels throughout the body and can also affect the blood vessels supplying the heart muscle, increasing the risk of heart problems, which is true in my case.

“I am sharing my story during Heart Month (February), to highlight that heart illness isn’t something that only affects older people, which is a frequent misconception. When I’ve told people about my condition, they have been so shocked because of my age.”

She added:

“I want to raise awareness that there are lots of younger people living with a heart condition, and many who are undiagnosed. I am lucky my condition was picked up; sadly, some people aren’t that lucky.

“That is why I am doing the Red Dress Fun Run; to raise awareness and funds for Northern Ireland Chest Heart & Stroke. They do so much great work trying to make people aware of heart health, risk factors and symptoms that something might not be quite right.”

A frightening diagnosis

Lucy recalls becoming seriously unwell when she was just three years old, with symptoms that were initially difficult to diagnose.

“When I was about three years old, I started to get very unwell on a regular basis. My doctor couldn’t diagnose what was wrong with me, but my mum kept taking me back as she knew something wasn’t right,” she said.

“I was having symptoms including fever, ‘strawberry tongue’, and the skin on my lips and hands was peeling off. It was originally thought I could have scarlet fever as some of my symptoms were the same as those associated with that. But I continued to be unwell.”

Her condition deteriorated rapidly.

“One day I was completely lethargic, and my mum rushed me to the doctor. He thought I was going into cardiac arrest, and I was taken to Antrim Area Hospital. After lots of tests I was diagnosed with Kawasaki disease. I was then transferred to the Royal Victoria Hospital in Belfast to have transfusions of IVIG,” Lucy explained.

“My parents were told the next 24 to 48 hours were critical because blood wasn’t getting to my heart.”

Lucy spent several months in hospital and was prescribed aspirin — one of the rare cases where the medication is recommended for children — along with additional treatments to manage its blood-thinning effects.

A childhood shaped by illness

Lucy pictured around the time she was allowed to go back to nursery following her diagnosis.

Although she was very young, Lucy says the impact of the disease stayed with her long after she left hospital.

“I was only nursery age at the time, so this was obviously very scary, and I didn’t understand a lot of what was going on,” she said.

“Even when I got home it was hard because I was so restricted in what I was allowed to do in case I got hurt and started to bleed. I wasn’t allowed to do lots of normal, everyday things.”

She recalls feeling isolated watching her siblings take part in activities she could not.

“Another example is when I was finally allowed back to school. My skin was very raw on my hands, and I had to wear white gloves to keep the necessary cream on and I was embarrassed and worried what people would think.”

Lucy believes the emotional impact of childhood illness is often overlooked.

“I think that’s something people don’t understand, it’s not just the actual living with a condition that’s difficult, it’s all the other effects and feelings that come with it too.”

Ongoing health concerns

Lucy is sharing her story during Heart Month to dispel the frequent misconception that heart illness is something that mainly affects older people and to raise awareness of Kawasaki disease.

Now in her early twenties, Lucy is once again facing uncertainty about her heart health.

“I was stable for a number of years but I’m currently waiting on a cardiology appointment because I have an irregular heart rate,” she said.

“My heart rate goes sky high on a regular basis. I can lie in bed, and my heart rate is 140 beats a minute. The doctor doesn’t know if this is because of the Kawasaki disease or the result of something else. I am on medication for this and it is of course worrying.”

Reflecting on her experiences, Lucy said:

“I’m only 22 and I’ve already been through a lot in life. It’s been hard and I’ve never actually really talked about it until now.”

She hopes that by speaking out, she can help others recognise symptoms earlier and encourage people to persist when something does not feel right.

“If my mum hadn’t kept pushing we could have been looking at completely different circumstances today,” she said.

Taking part in the Red Dress Fun Run

Lucy will be walking the 5K route at this year’s Red Dress Fun Run, which takes place at Stormont Estate, Belfast, on Sunday 22nd March.

“I am not a runner, I will be walking the route, but that’s part of the appeal of the Red Dress Fun Run, it’s for everyone no matter your age, ability, fitness level,” she said.

Last year’s event attracted more than 700 participants, with organisers hoping for another sea of red in 2026.

Leigh Osborne, Community and Events Fundraising Manager at NICHS, said:

“We are so grateful to Lucy for sharing her story, raising awareness of heart conditions and for supporting the Red Dress Fun Run. Sadly, so many people are affected by heart illness in our local communities.

“Heart disease kills nearly twice as many women in Northern Ireland as cervix, uterus, ovary and breast cancer combined and coronary heart disease is the biggest single cause of premature deaths in people younger than 75 here.”

The event is once again supported by long-term partners MACE and Musgrave MarketPlace. Diane Anthony from Musgrave said:

“Whether you are taking part in memory of someone you have lost to a chest, heart or stroke disease, are celebrating someone who is living with such a condition, or want to help prevent these diseases affecting someone in the future – sign up and join us to support this worthy cause!”

People can register for the Red Dress Fun Run at https://www.nichs.org.uk/RedDressFunRun