Grieving parents who lost their baby to a rare disease linked to Covid-19 say his legacy has been to save the lives of at least 12 other children.
Little Alex Parsons died at just eight-months-old after doctors diagnosed him with Kawasaki disease.
His illness was initially a mystery to his parents and it began with a pinprick rash that quickly spread all over his body.
But the disease is now being linked to one called PIMS-TS that has been affecting youngsters after they have had Covid-19.
Although his family don’t know if Alex had coronavirus before he died as testing was not being done at the time, them raising awareness of it has been credited with saving at least a dozen other children.
Parents Kathryn Rowlands, 29, and Jon Parsons, 31, from Tavistock, Devon, said they rushed Alex to hospital when his condition worsened but despite prompt treatment he passed away.
After Alex’s death, Kathryn made it her mission to raise awareness of the disease – as early treatment can mean the difference between life and death.
And she has now been contacted by 12 families from around the world to say they were able to identify the symptoms in their children, directly because of baby Alex.
She said: “He is amazing, he has changed my life for ever and the fact that he has managed to save other children is quite overwhelming.
“He has saved at least 12 lives, several people got in touch saying how because of the awareness that was raised they were aware of the signs and sought treatment, it saved their lives.
“Everyone said they remembered the stories and the pictures and then when their children became ill they were able to get help immediately.
“The heart break of losing Alex will never go away and nothing will make that better, but the fact he has raised this awareness and saved other people brings some sort of comfort to us.”
Alex was described as a fit and healthy baby and was pictured smiling just before he fell ill.
Kathryn said that she had never heard of Kawasaki disease until the doctors mentioned it to each other by Alex’s bedside.
She added: “When things started he was quite miserable in himself, he had a high temperature and the next day he had a pinprick rash and it quickly spread.
“It looked like he had sunburn all over his body.
“Then he had a lump that came up in his neck, that was really large and we queried if it could be mumps to begin with.
“Then he had sickness and diarrhoea and he was admitted to hospital, then he got really dry, cracked bleeding lips.
“His palms of his hands and soles of his feet were bright red, and you could feel how fast his heart was racing.
“Alex was eight and a half months old when he passed away, he was our first child. It was devastating.”
Kathryn said that Alex’s death had left a whole in the family, and she wants to raise awareness of the disease so that other families don’t suffer the same fate.
She added: “I’d never heard of the disease, the first time I heard of it was when a doctor queried it in front of us.
“It’s the leading cause of acquired heart disease in children, the Kawasaki society have raised a lot of awareness but it’s not very widespread, you just don’t know about it until someone you know is affected by it.
“More people should know about it, definitely. I feel that I would love there to be a grater awareness in general.
“It wasn’t the case for Alex because he was treated quickly, but with a lot of children it can be misdiagnosed.
“They don’t get the treatment they need and then develop problems with their heart.
“Alex went from 0 to 100 and they did everything they could have done.
“With a lot of children it’s the delayed response to being treated and diagnosed that causes the long term issues.
“Alex had the treatment. But a doctor said that children under the age of one and males are the most worried about as it seems to affect them more and they don’t respond to the treatment as well.
“They told us the day before he died that they were very concerned with his scans, but we didn’t expect it to happen they way it did.”
After Alex’s death, his family set up a Facebook group where they could share news about the illness – making other parents aware of the symptoms.
It was through that group that people from around the world contacted Kathryn, saying that because of Alex’s battle with the disease they became aware of the symptoms.
She added: “The people who contacted us are from all around the UK, a few from America got in touch as well.
“A lady who was outspoken about it said it was purely because of Alex that she knew anything about it, she’s very thankful and said he will always be her hero.
“It can never bring him back or make things better for him, but the fact that he’s raised that awareness and saved other peoples’ lives is the only comfort that we can take from the situation.”
Kathryn is also now urging the Government to explore the link between Covid and Kawasaki disease, as they believe Alex may have suffered with the pandemic before his death.
Her sister, Hannah, said: “We cannot say either way if Alex had previously contracted Covid, although he was symptomatic with a cough and fever in late February, but at the time, no testing was available.
“PIMS-TS has similarities to Kawasaki disease but it appears to be affecting children of all ages following a Covid-19 infection.”
Kawasaki disease, also known as mucocutaneous lymph node syndrome, is a rare condition that mainly affects children under the age of 5.
With the hospital treatment, the symptoms usually become less severe but in some cases it causes the blood vessels to become inflamed and swollen, which can lead to complications in the blood vessels that supply blood to the heart.
A JustGiving page has been made to to help support Kathryn and Jon, and anyone wishing to donate should visit www.justgiving.com/crowdfunding/hannah-rowlands-1.