Tina Boileau is the proud mother of two. Her son Jonathan, also known as the Butterfly Child in the Ottawa region, was born with Recessive Dystrophic Epidermolysis Bullosa (RDEB) and her daughter Noémy, is a carrier of the gene. Tina was first introduced to EB when her son was born 19 years ago. After a long stay at the Neonatal Intensive Care Unit (NICU) at CHEO, Jonathan was diagnosed with RDEB. As a young mother, Boileau quickly became an expert at managing blisters and doing dressings. She quickly became a fervent advocate for her son’s care.
Tina works full-time for the federal government and has been serving as President of DEBRA Canada (Dystrophic Epidermolysis Bullosa Research Association of Canada) since 2015. She became involved with the organization as a director on the board of directors in 2012 following the DEBRA International Congress which was held in Toronto. 12 year old Jonathan and Tina were invited by the EB clinic at Sick Kids Hospital in Toronto, to be guest speakers on the patient/family panel. This was the first time Jonathan had met other people with EB. Tina knew nothing about charitable work but was confident that her years of experience of caring for a child with a severe skin condition and self-managing the many challenges that came with EB gave her valuable insight that would serve her well in her role with the Foundation. She saw this 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 who may not have the strength or voice to stand up and show the world true resilience and tenacity in the face of adversity and to never give up; that tomorrow will be a better day.
DEBRA Canada helped Jonathan connect with others like him and gave him a sense of belonging in the community. Like other “butterfly children”, Jonathan touched the lives of many people with his courage and positive attitude. Mother and son became active proponents of the Ambassador Program. Together they strived to inform, educate and create awareness about EB. Jonathan became the face of EB, an inspiration to so many… a local hero… her hero. A young man, who suffered unnecessarily and unfairly all his life, yet possessed such strength, wisdom and selflessness as he led the charge to bring global EB awareness and support. The outpouring of love and kindness that followed from Jonathan showing EB in its true form on the different media platforms was overwhelming, to say the least. He made himself vulnerable to the world exposing the open wounds that resembled third degree burns that covered more than 85% of his body and how it impacted his life. But the thing that was the most staggering was his joie de vivre, his smiling face and seeing how he enjoyed his life… he loved to live despite the challenges he faced, and he did it so gracefully.
Over the years, Jonathan had become the son and the brother of everyone in the Ottawa region. Jonathan and Tina’s openness to share with the world the ups and downs of their battle with EB gave people hope for brighter days ahead. Most people, even the ones that had never met them, fostered strong connections to them. They took a little-known disease and have increased its awareness tenfold. A condition that was never heard of is now making top national story discussions. Other children suffering from EB are getting the attention necessary to help them get adequate treatments. Education and understanding of EB have helped eliminate some barriers in the healthcare system, schools, workplaces, making it a little more bearable for the EB community and their families. DEBRA Canada has seen its donations, supporters and volunteers increase.
DEBRA Canada has grown a lot; especially over the last few years. It’s the result of the generosity of people through donations, volunteers, fundraising efforts that it has been able to expand its programs and services. Boileau is proud to share some of those successes. The organization has funded the EB Fellowship program at Sick Kids for the past few years. The first Fellow has now moved on to be a permanent dermatologist at CHEO. DEBRA Canada hopes that the next fellow will bring knowledge of EB to another hospital in Canada. Having doctors and specialists that know EB is instrumental to the families. The charity has been able to fund medical assistance requests that have been submitted over the years. The requests vary from covering the costs for dressings that are not covered by public or private insurance, to paying for retrofits for cars to enable a person with EB to keep their independence, to covering anything that can improve quality of life or lighten the burdens on the families. Tina understands firsthand that trying to keep up with the everyday care of someone living with EB is often more than most of us can handle, being able to play a small part in alleviating the additional stressors is priceless.
After complications from an infection and a valiant fight; Jonathan passed away on April 4, 2018, with his mother by his side. Boileau along with her daughter, family, friends and a village of supporters are determined to keep Jonathan’s wave going by pursuing his mission into finding a cure for EB. As the mother of a child with a rare disorder, Boileau understands that there is still a lot of work to do until a cure is found and even more until it becomes available. Jonathan showed her the true meaning of fortitude and determination. He is her unwavering strength to continue to be a passionate advocate for the patient voice in ensuring proper care for people living with EB and their families.
Tina Boileau’s long-term goal is to be able to offer a life free of pain to the people living with EB and their families. She wants to use her untiring commitment and drive to bring awareness and effective treatments that will change the current statement that Epidermolysis Bullosa is known to be the worst disease you’ve never heard of, to the worst disease you will never hear about again, because people will be cured and free from this disease. Until then, there is still a lot of work left to do. Tina affirms that acknowledging EB and the people that suffer from this horrendous condition is a great start, but the work doesn’t end there; curative treatments are needed to get this accomplished. She encourages people that have been touched by her son or another disease to support the organizations doing work on the ground to make it better for the warriors and the survivors. Help spread the word, donate and volunteer. These are all small but effective steps that can make a difference. Community, like charity, begins at home. You start building a good neighbourhood when you yourself decide that you will be a good neighbour.