Tina Boileau is the proud mother of two. Her son Jonathan, also known in the Ottawa region as the “butterfly child, was born with recessive dystrophic epidermolysis bullosa (RDEB) and her daughter Noémy is a carrier of the gene. Since 2015, she has served as president of the Dystrophic Epidermolysis Bullosa Research Association of Canada (DEBRA Canada), while working full time for the federal government.
Tina was first introduced to EB when Jonathan was born 19 years ago. She quickly became an expert at managing blisters and doing dressings, as well as a fervent advocate for her son’s care.
Tina joined the DEBRA Canada board of directors in 2012. She knew nothing about charitable work but was confident that her years of experience caring for a child with a severe skin condition and self-managing the many challenges that came with EB gave her valuable insight. She saw the board as an opportunity to give back to her community, share her knowledge and encourage Jonathan to use the power of his voice to help others.
Like other “butterfly children,” Jonathan touched the lives of many people with his courage and positive attitude. Mother and son became active proponents of DEBRA’S ambassador program. Together, they strove to inform, educate and create awareness about EB.
Over the years, Jonathan became the son and the brother of everyone in the Ottawa region. A condition that had been unknown became a top national story. Now, other children suffering from EB are getting the attention and treatment they need, while education and understanding of EB have helped eliminate some barriers in the health care system, school and the workplace.
DEBRA Canada has seen its donations, supporters and volunteers increase. It has funded an EB fellowship program at the Hospital for Sick Children in Toronto for the past few years. The charity has also been able to fund medical assistance requests, varying from covering the costs for dressings not covered by public or private insurance to paying for retrofits for cars to enable a person with EB to keep their independence.
After complications from an infection and a valiant fight, Jonathan passed away on April 4, 2018, with his mother by his side. Tina, along with her daughter, family, friends and a village of supporters, is determined to keep Jonathan’s mission to find a cure for EB alive.
Tina Boileau would like to be able to offer a life free of pain to people living with EB and their families. She wants to raise awareness and develop effective treatments, to turn “the worst disease you’ve never heard of” into the worst disease you’ll never hear about again.