Can you imagine the pain of having a child who has a terminal disease? If you were that child, how would you deal with the reality that your life will end way too soon? It is tragic that millions of children suffer from terminal illnesses, more so if it comes with too much pain on a daily basis. One boy has a one-in-a-million disease that causes him unimaginable suffering every day and cuts his life short until 25 years old. Read on to know the hardship he faces and be inspired by his bravery.
Warning: The pictures and video on this post may be too graphic for some readers.
Jonathan Pitre from Russell, Canada has a severe and rare genetic condition called Epidermolysis Bullosa or EB.
This condition causes his skin to erode, have blisters and tear like a butterfly’s wings, earning him the moniker “Butterfly Boy.”
95% of his body is covered with blisters that have to be wrapped with bandages as the slightest touch will tear his skin and cause him excruciating pain.
Jonathan said, “The everyday challenges of EB is everything, really, to eating, to walking, to getting dressed, this condition is very rare. My skin in general, the wounds have gotten deeper and now they’re chronic wounds which means that they never leave.”
He was diagnosed with this condition when he was a baby.
His mother Tina Boileau said, “Jonathan was starting to have little blisters in his hands. We didn’t know what it was causing it. He stopped breathing cause he had blisters all in his esophagus. So they did a skin biopsy in which it came back saying that Jonathan had EB.Jonathan was in the hospital for over a month. This was a curveball that I was not expecting but I mean this was my life and he was my baby and I was gonna do whatever it took to be able to care for him.”
Everyday Jonathan follows a strict routine that starts with medication.
After removing his bandages and dressings, his mother gives him a bath soak.
He said, “The bath is horrendous. It takes very long, 3 1/2 hours,approximately.”
After the bath, his mother has to put new dressings all over his body starting from the foot going up.
Jonathan’s condition has also affected his personal life. “It’s very hard to make friends with people just because of the everyday routine. And if I did have, I wouldn’t have time. I would never be able to hang out with them”, he said. His mother said that he has to come home right away to get a bath and on other days he has to do homework.
In spite of his condition, Jonathan remains positive. He has reached out to other children who have EB called “Butterfly Children”and joined an organization called DEBRA International, a group that works for them.He wanted to become an ambassador so that more people will be aware of his illness.
He said, ” I only have a life expectancy of 25. I’m already past half my life, so when you think about that it gives you new perspective. You should live life to the fullest.”
Jonathan’s ultimate dream is to see the Northern Lights because for him it is symbolic of the friends he lost to EB. “It’s just so beautiful to see the lights dance in the sky and it gives me a sense of hope that one day we will be free of pain. I will stop having limitations and I’ll be able to do whatever I want. That’s why you shouldn’t always think about what you don’t have. Think about what you do have. Think about all the happiness around you , all the love, not all the negative stuff and you will be a very happy person.”
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We can all learn from Jonathan’s wisdom and courage. I hope his story will be shared so that more people will be inspired to help him and other people with EB. Let’s be thankful we are blessed that we don’t have to go through his ordeal.