A mother has shared photos of her seemingly healthy son to highlight the “monster” hiding beneath the young boy’s shirt.
Katie Lawrence, from Warwick in England’s West Midlands, revealed on Facebook her son, Acer, had a life-threatening heart condition that could send him into cardiac arrest just by playing.
One of the photos shows the boy sitting on the grass smiling compared to another of him in hospital with tubes dug into his chest.
“There’s a week[’s] difference in these photos,” Ms Lawrence wrote on Facebook.
The images show the reality of living with coronary heart disease, a birth defect that affects about 1 in 100 babies in Australia.
It occurs when large blood vessels fail to form properly around the heart, affecting the blood flow to the heart and the rest of the body.
“CHD is a monster. A terrible, vicious monster that puts so many newborns, infants, toddlers, children, teenagers and adults through PURE HELL fighting for their lives every single day,” Ms Lawrence wrote.
“CHD is lifelong, there is NO CURE.
“No matter how many surgeries, medicines, catherisations, blood transfusions, etc a CHD child has, they will forever live with their defect.”
Ms Lawrence urged people not to say “they don’t look sick” because under their clothing, hidden beneath their scar, “their little hearts have a completely different story to tell”.
“It boils my blood these children after suffering because they don’t appear so ill,” she wrote.
“Please don’t say, ‘well it’s 2020 they can make advancements to help your kid in a few years’, to a heart family. The unfortunate truth is many of these babies don’t live to see their first birthday.”
“Truthfully the number one thing to do if you want to save lives is use your voice. Advocate. Educate. Tell others these same facts I’m telling you. Be a voice that makes a difference for these children,” she said.
“No newborn should have their chest cracked open and their heart stopped. No child should be told they can’t go play because they risk cardiac arrest. No teenager should have to limit their goals because they were born with a heart defect. No adult should fear death as their 30s approach.”
According to the Heart Foundation, an average of two people died of CHD each hour in 2018, equating to 48 Australians a day.
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