A mother from Hitchin is on a mission to spread the word about a rare disease following her son’s life changing diagnosis – creating a cartoon character called The Kawasaki Kid.
Lucy Patterson has seen her family’s life turned upside down after her two-year-old son Stanley, who attends Highbury Lodge Day Nursery in the town, was diagnosed with Kawasaki disease – a rare affliction affecting around eight in every 100,000 children under the age of five in the UK each year.
Kawasaki causes blood vessels to become inflamed and, if left untreated, can inflame all the arteries in the body as it makes its way to the heart.
Lucy, 32, told the Comet: “I have two choices, shy away, accept our fate. Or fill my brain with everything there is to know about Kawasaki, help my boy, help raise awareness and help raise money for research.
“I think it’s time to become the expert.”
Kawasaki disease looks like any other childhood illness and often starts out with what resembles a fever.
When brave Stanley first became feverish he was taken to Stevenage’s Lister Hospital where it was initially suspected he had meningitis. He was treated for a week before they referred him to the London’s Royal Brompton Hospital in a bid to get to the root cause of the problem.
“We went for a regular check up and got rushed into paediatric care,” Lucy told the Comet.
“It was the most frightening time of our lives. It turned our world upside down.”
After a scan things got very scary, very quickly – and Stanley was immediately admitted to the hospital’s paediatric intensive care unit.
Lucy explained: “We were surrounded by doctors and nurses saying lots of scary things.
“After further investigation, the cardiac specialists revealed he had two giant aneurysms and believed there was a clot.”
Stanley spent the next 10 days in intensive care, with his mother by his side at all times as the news dawned on them that he would require lifelong cardiac care.
The family may have returned home, but the ordeal had just started.
Lucy explained: “He will be on blood thinners for the rest of his life and monitored every week by cardiologists at the Royal Brompton for the first eight weeks, then every month in his childhood.
“Every day, twice a day, I have to inject our son for the foreseeable future.
“Every time I put the needle into my crying child, my heart breaks.
“Over his tears I just say ‘I love you, I love you, I’m sorry, I’m sorry. This is your lifeline little boy, this is keeping you alive’.”
Even day-to-day bumps and scratches most parents take for granted could be life-threatening.
Lucy was told to make sure Stanley didn’t hit his head, but kids being kids meant unfortunately the inevitable happened.
He was rushed to the Chelsea Middlesex Hospital where she had to explain about his Kawasaki diagnosis as the doctors had never heard of it before.
It was this moment which made Lucy realise she needed to raise awareness both about the disease, and Stanley’s own story.
With the help of Ben Ward, a family friend, Lucy created the Kawasaki Kid – a superhero based on her son.
“The Kawasaki Kid is a superhero, and like my boy he has spirit in his heart and fire in his belly in spreading the word of Kawasaki,” said Lucy.
“I’m telling everyone about it. I’ve been in touch with so many people to try and spread the word because no one knows about it.
“I am so driven to get the word out there. I will not sit back and let this be the unknown childhood disease that no one has heard of.
“I will be fighting like a warrior to raise awareness of this horrible disease in the hope that one less child will have to suffer the way Stanley has.”
As for the Patterson family, including four-year-old big brother Henry, the ordeal has changed them forever but they are united – and determined to raise as much awareness as they can.
Husband Andrew – a talented runner at Stevenage’s Fairlands Valley Spartans and a manager at Deloitte – is set to raise funds as he attempts further runs, as well as looking to beat his marathon personal best of around two hours and 49 minutes.
They still have a lot ahead of them, but Lucy is defiant that her son is destined for great things.
“We are told he won’t be able to play football, rugby and do a few other things as he gets older,” she said.
“But this won’t define Stanley, this won’t stop him.
“Watch my baby soar, because the universe has a plan for him. He is destined for great things.”
To learn more about Stanley’s story and the Kawasaki Kid, visit www.kawasakikid.co.uk, search for The Kawasaki Kid on Facebook and follow their story on Instagram @the_kawasaki_kid1.
To learn more about Kawasaki disease, visit www.nhs.uk/conditions/Kawasaki-disease/Pages/Introduction.aspx.
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