The Story Of The Little Boy Whose Skin Falls Even At The Slight Touch Is Really Painful
Every young boy in his sweet teen years goes around in the society making friends, playing, having fun basically enjoying himself to the fullest. But, not everyone gets such an opportunity.
This 15-year-old Jonathan, tragically called as butterfly boy does not have the privilege to live a carefree life!
#4 The Painful life
Jonathan Pitre, who lives in Russell, Canada is now a teen, he was born with epidermolysis bullosa. It is a genetic condition that causes blisters in his skin, and the skin gets peeled on a daily basis, 90-95% of his body is covered with blisters, which looks as if it’s a third-degree burn. The blisters are so painful that it makes the simplest of tasks, impossible.
The excruciating pain is so severe that he has constant headaches and nausea and he has to spend sleepless nights.
#3 The Helpless mom
It is mandatory for him to stay bandaged like a mummy to protect his skin, or it will peel off at a just slight touch.
Jonathan’s mother, Tina Boileau 35, is forced to watch her son in pain as she wraps him in bandages from head to toe after his regular salt baths to ensure he doesn’t get an infection.
#2 His condition is getting worse
His skin is covered with wounds, and must go for regular surgeries to open us his hands and fingers that can fuse with layers of skin, are susceptible to skin cancer. His severe condition has left him in a wheelchair. He is on extensive medications where he is prescribed to take 4 pills a day, which includes painkiller, morphine.
On occasion, he said that “I have that little part of me that’s conscious when I sleep, and sometimes I wake up because it hurts so badly.”
Despite this, what he says would surprise even the toughest of people, “As a kid, I loved Pokémon’s, and back then I would imagine myself as one of them, and I would defeat EB with all their powers.”
#1 Watch him here!
Jonathan’s entire family and his little sister, Noemi, 13 has entitled their life taking care of him. For Tina, it is really a challenging task every day to see her son in such deep pain. She further says, “You know you’re hurting him and you can’t stop, you have to keep going.”
Children suffering from EB are called ‘Butterfly children’ because of their fragile skin. Jonathan is an ambassador for DEBRA, a charity which seeks awareness of EB. He has raised over $100,000 towards research for the cure by speaking on behalf of charity by travelling across the country.
This little boy is a fighter and a constant source of inspiration to all the people in this world.
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