“If I had listened to the paramedic my daughter may not have been here" Milton Keynes mum's call for more awareness after daughter diagnosed with rare kawasaki disease
A mum from Milton Keynes has called for more to be done to highlight kawasaki disease, after her three-year-old daughter was treated for the rare condition.
Maisie Sylvester says she believes GP surgeries and hospitals should display posters about the condition, which causes swelling of the blood vessels throughout the body.
It is most common in under-fives, but only affects around eight in every 100,000 children in the UK in the age group.
Maisie’s three-year-old daughter Charlotte was diagnosed with the illness in April 2024 after 10 days of being unwell with symptoms.
Reflecting on when she first realised something was wrong with Charlotte, Maisie told the Citizen: “My one-year-old son had a sickness bug, and when Charlotte woke up she had a temperature and virus symptoms, and was unwell after one day.
“I could not pinpoint what was right, but it looked like cold symptoms. Her temperature was going up to 40C. I noticed that the skin was peeling on her feet and hands. She had strawberry tongue and rashes on her body.
“I rang the GP and asked to bring her in. I was seen by a paramedic at the GP, who said I was overthinking and panicking unnecessarily.
“The next day she went properly downhill. She was very drowsy and had a swollen neck. It hurt Charlotte to move her head, and her eyes were red and bloodshot.
“I took her to see the GP again, and this time I had been in the room for less than a minute, and the GP said you need to get her straight to A&E because we think she has sepsis.
“Once we got to Milton Keynes Hospital we were sent straight to a ward. They said it was not sepsis, and thought she may have meningitis.
“They did a lot of tests but did not know what was going on. She was given antibiotics for two days, but her infection levels were getting higher.
“One of the doctors made a passing comment that Charlotte may have a disease. I typed in the symptoms and kawasaki disease came up, so I called the doctor and asked them to test for it.”
Charlotte was diagnosed with the condition and was treated with immunotherapy, had a feeding tube and was wired up to heart monitors, as her blood was constantly taken.
“It was an awful time for all of us and she did not seem to get any better,” Maisie said.
“Charlotte did eventually turn around and was eventually discharged, but then she had to be on aspirin to stop her blood clotting, and it gave her severe headaches and she would wake up with very heavy nosebleeds.”
Charlotte’s heart was checked six to eight weeks after she was discharged, and although her heart will have to be checked regularly, doctors expect there will not be any lasting damage.
Maisie said the chain of events took a toll on the family, who live in Shenley Church End, and said she wished hospitals and GP surgeries would display more information about the condition.
“If I had listened to the paramedic my daughter may not have been here,” she said, “I do not understand why the NHS are not providing information about this disease – I wish there could be posters in hospitals and doctors surgeries for this - like there are for sepsis or meningitis.
“We had over a month of back and forth, and my oldest daughter Abbie, who shares a room with Charlotte, was very anxious.
“My youngest Max, is only one, and we had to spend his first birthday in hospital.
“There is no known treatment to cure kawasaki disease, but hopefully the treatment Charlotte had will mean there are no lasting complications.
“I just want more awareness about this condition. A lot of people have never heard of it until it affects them, and it is a very dangerous illness.”
Kawasaki disease can cause a high fever and rash, and can affect the blood vessels which supply the coronary arteries.
The disease only affects around eight in every 100,000 children in the UK under the age of five, and is much more common in Japan.