My name is Micheline Boileau-Bougon and this is my EB story, from the perspective of a sister and an aunt. It all started June 2nd, 2000, when my godson Jonathan Pitre was born.
I was honoured to be selected as the godmother to the first born of my siblings. My sister, Tina, had invited me to be part of the miracle that is the birth of a child.
While we all waited patiently for Jonathan’s birth, we were filled with excitement, joy, and emotions when we welcomed this baby boy into the world. All was cause for celebration. I rushed home to decorate the foyer with a WELCOME HOME banner before heading out of town. Being a proud new aunt, I spent the weekend bragging about the new addition to our family and couldn’t wait to get back home to spend time with the proud parents and our precious boy.
Sadly, I came home to an empty house, no sister and no sleeping or crying babe. Minutes later, as I listened to the messages, I realized that something had gone terribly wrong and they were not coming home. I rushed to CHEO where I quickly learned the struggles that Jonathan had endured through the first night; where he for reasons still unknown at the time, had stopped breathing.
Living each minute in the unknown left our young family devastated and anxious for answers. Nearly a month later, Jonathan was still in the NeoNatal Care unit and our family found out about the worst disease we never heard of ... Epidermolysis Bullosa. I remember seeing my sister’s cry in despair at the reality that her son, my nephew, was suffering. It was the last time I saw her cry.
Finally home, the challenges of EB quickly became a reality. Selfishly, I wanted to cuddle with my nephew, hold him, feed him, rock him, and bathe him. The slight touch would prove to be painful, leave marks, and hurt him. I remembered watching my sister valiantly modify the environment to accommodate the needs of my nephew and try to make his life more comfortable. From using cloth diapers (disposable diapers’ velcro caused wounds), to the opening of bottle nipples (suction caused blisters on his tongue, lips, and palate), and removing any zippers and velcros on Jonathan’s clothes (friction caused open wounds).
Eighteen years ago, little to no information or help was available. This skin condition was unknown to most. Through trial and errors, successes and failures, we lived and learned, I knew we would do whatever was necessary to assure a quality of life that would be in the best vital interest of Jonathan. To our amazement and thanks to our Eastern Ontario Catholic schools, Jonathan was able to go to school which is something that seemed so unlikely.
As I watched Jonny-boy grow up, he had a liking for hot wheels cars and speed. He loved fast cars and my husband enjoyed taking him to car shows. The Fast and the Furious collection became our family go to movies. Now, Jonathan excitedly awaits for the day when he will be able to drive an ATV, a boat, or a snowmobile alongside his uncle Mikey and cousin Dominic.
Today, Jonathan is an interesting, motivated, and a self-directed young man with a mission…to spread EB awareness alongside his mother.