I CAN’T CUDDLE MY SON BECAUSE IT MAKES HIS SKIN FALL 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.
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.
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.
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.
Check the below video to know more about this Butterfly Child.
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