This begs for a redefinition of the concept of “hero,” all the more that the world today is in desperate need of saving. My feeling is that there is no such thing as one hero, but that the entity of “hero” is in fact the sum of the efforts of individuals such as Deb, who have the courage, conviction and drive to take one step forward in making the world a better place for everyone, even those affected by a rare genetic disease.
One thing that makes Deb a hero is that while her main drive is her son Trey, she hasn’t lost sight of the lack of justice for all patients suffering from rare diseases. Her passion for justice in the medical field has translated into her adopting the cause creating an Orphan Drug Policy for Canada. While Canada does has a great medical system, the fact is that it still needs work to become better; one aspect is that it is the only developed country in the world that doesn’t have an orphan drug policy, and consequently, doesn’t fund research into rare diseases. That there are only 35 people in Canada diagnosed with Hunter Syndrome therefore translates into a lack of research, despite the talented pool of medical researchers available in the True North.
So who is this hero? Deb’s humility when presenting herself is touching: “I am a mom who is fighting for her kid's life. When I found out no one in Canada was researching a cure for Hunter Syndrome, and my little guy has Hunter Syndrome, I couldn't sleep knowing that his disease was progressing and no one in our country was doing anything about that. So I got on it.”
Deb’s involvement with raising awareness and funding for research for a cure for Hunter Syndrome began on Valentine’s Day 2006. Little two-year old Trey was suffering from various symptoms and had already had two peadeatrics visits; but Deb’s mothering instincts kicked in and, in her own words, she didn’t quite jive with the physicians, partly because they were keen on pushing antibiotics and steroids on Trey, without knowing what was causing all the symptoms he was suffering from. And so, she decided to give this third pediatrician a try, a doctor whom she had heard about and had decided to give a chance.
It turned out to be a match made in heaven. Dr. Thiessen turned out to be what the family needed (so much so that he is still, to date, the family’s pediatrician). He told Deb and her husband that he thought Trey had a 'storage disease'; from there, Trey was referred to various specialists for test and by May 2006, Trey was officially diagnosed with Hunter Syndrome.
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