We bring you the stories of two young boys living very far from each other. They share a common skin disease that is as rare as it is excruciatingly painful. They are known as “butterfly children” for a condition that leaves their skin as fragile as a butterfly’s wing.
The stories of two butterfly children
Butterfly children: Harshit with his parents
Harshit Talwar, 10, can never join his friends in the playground. In school, according to a TODAY article, this young boy sits in a corner during recess and PE while his friends play.
He shares, “Sometimes I feel like crying inside when I see my friends having fun.” However, keeping Harshit away from rough-and-tumble childhood games is essential for his health.
This is because an accidental bump or minor tumble could make Harshit’s skin blister or “peel off like an onion, exposing the raw layer underneath”, says his father Navdeep Talwar.
Harshit also has no nails on his toes and fingers, and his fingers are fused together (common among butterfly children), making it very hard to even hold a pencil.
Butterfly children: Jonathon being helped into school by his teachers aid
14-year-old Jonathan Pitre will never fulfill his dream of being a hockey player. More than 90 per cent of his body—including his mouth and throat—is covered in blisters and wounds resembling third degree burns.
The Canadian boy cannot carry out every day movements like eating and climbing stairs without great pain. He can’t even think about playing sports.
He struggles to stay awake throughout his three- to four-hour bath, assisted by his mother. Together, they carefully remove the gauzes and bandages all over his body, and afterwards redress his wounds. He is in agony even in his methadone induced sleep.
“Butterfly children”: What is this condition?
Both Harshit and Jonathan suffer from a rare genetic skin disorder known as epidermolysis bullosa (EB).
This is an inherited, painful skin disorder that causes the skin to tear and blister at the slightest trauma. It affects eight out of one million births worldwide. Children with EB are also known as “butterfly children” because their skin is as fragile and tears as easily as butterfly wings.
Symptoms first appear in butterfly children when they are babies or toddlers. In the most chronic cases, those affected have a life expectancy of 25 to 30 years.
There is no known cure or prevention for EB even though research on the treatment of the condition is ongoing.
In Singapore, about 10 to 15 butterfly children, including Harshit, are on follow-up care at KK Women’s and Children’s Hospital’s Dermatology Service.
Hope… as fragile as a butterfly and as tough as these boys
Speaking to Ottawa Citizen, Jonathan said, “I can’t play sports but there’s much more to sports than players. So that’s why I came into sportscasting and scouting and coaching, that’s where it all started.”
Watch the following video to learn more about Jonathan’s daily battles and how he overcomes his condition.
And just like Jonathan, Harshit also has big dreams—he wants to be an astronaut.
“There is nothing left in life without fun,” Harshit told TODAY… and we have to agree.
If the stories of Jonathan and Harshit tugged your heartstrings, you can head over to DEBRA Singapore to learn more about the condition, become a member at no cost or help to donate. You can also share this story about these beautiful butterfly children, to spread word and raise awareness about the condition.
Also read: Primary Immunodeficiency Disorder in children: Why this dad is running for his son
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Republished with permission from: theAsianParent Singapore