This little boy’s skin falls away even at the slightest touch. Read his painful story
At 15, every young boy is vibrant and lively. The mid teens are the best years of your life where you make friends, have fun and basically enjoy to the fullest. Unfortunately!! Life isn’t easy for some. For 15-year-old Jonathan, chances are that he has just 10 more years to live.
You see, Jonathan is called the butterfly boy, for the most tragic of reasons. This boy’s skin falls off like the pupa of a butterfly. His delicate condition makes his skin burn and peel off his body leaving him in a constant state of pain and suffering.
1 This Boy Suffers From the Most Painful Condition Where His Skin Falls Off
Jonathan Pitre lives in Russell, Canada. In spite of living in pain and experiencing the most excruciating of circumstances, this little champ is a fighter and an inspiration to all around him.
Jonathan suffers from a horrible condition called Epidermolysis Bullosa or EB. This means if you just touch his skin it will peel off. At most parts of the day, Jonathan is a living mummy as he is required to be in bandages to protect his skin.
2 Jonathan’s Mother Is Helpless and Can’t Bear His Condition
Jonathan’s skin condition is so bad that he experiences excruciating pain and the skin peeling off is akin to a third degree burn. Jonathan’s condition causes him immense headaches, fits of nausea and sleepless nights due to the intensity of pain.
Jonathan’s Mother Tina Boileau, 35, is helpless and her heart cries out to her son. It is no doubt painful for any mother to see a child suffering in the worst way possible. It is Tina who has to wrap Jonathan in bandages when his condition worsens.
3 The World Needs To Wake Up To the Butterfly Children
Jonathan and children like him are called the ‘butterfly children,’ because of the fragile skin. What’s worse is that there is no cure. Jonathan says that he feels pain every day, even when he is sleeping.
He says, “I have that little part of me that’s conscious when I sleep and sometimes I wake up because it hurts so badly.”This butterfly child is really under great amount of pain, but there is alesson to be learned from Jonathan. Despite of his ordeal, this little boy is actually an ambassador for a charity called DEBRA which seeks to raise awareness of EB. He has been across the country speaking on behalf of the charity raising over $100,000 towards research for a cure.
4 Jonathan Is Now Restricted To A Wheelchair. His Condition Is Worsening
Since his childhood, Jonathan was quite active, cheerful and loved the outdoors. He was born with the fearsome condition. Over the years it mercilessly attacked him and got worse. His entire body is covered in injury and he could also be having skin cancer. Jonathan needs surgery now and then to prevent the skin of his fingers from fusing. In fact, at this very moment he may be in a wheelchair as the boy’s skin falls off on a greater extent. The disease is taking its toll and movement is difficult.
Most of us whimper at the slightest of pain,westay put even though we have a cold. Yet Jonathan despite of his pain wants to travel and see the northern lights because they remind him of the friends he has lost to EB.
5 It Takes Three To Four Hours to Clean and Bandage Jonathan
Hearing Jonathan speak would surprise even the toughest of men. “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.”
Jonathan’s daily routine consists of a daily bath where Tina has to pierce all of his blisters in order to prevent them from getting infected. His sores and wounds are cleaned and medicated before getting rebandaged again. He is on extensive medication where he has to take 4 pills a day which includes morphine to relieve the pain.
6 For Jonathan, Life Ends At 25!!
Jonathan’s entire family including his 13 year old sister Noemi has reinvented their lives customizing it towards care for Jonathan. For Tina especially, it is an emotional upheaval. At times she can’t bear to see him in such a painful condition. She says “Its hard work seeing your child in pain every day.” She further adds, “You know you’re hurting him and you can’t stop, you have to keep going.”
The mother remains concerned and scared, saying, “Every time a wound doesn’t heal, or there’s a bigger wound, or it gets deeper, you’re always concerned the cancer is going to get in there.”
For Jonathan’s mother, the pain could be equally harsh, knowing that in ten years her little champ will be no more. But for Jonathan, the next ten years mean life and living. He says, “I only have a life-span of 25-years – I’ve already lived over half my life,” “It gives you a new perspective, think of what you do have, think of all the happiness around you, think about all the love.”
“Every day is a battle and every day is a battle won, this is me, it’s how I’m supposed to be so I deal with it.”
That’s Jonathan for you!! Watch this inspiring video of Jonathan Pitre, The Butterfly Boy, who inspires people.