I do not believe things happen by chance. I believe things are brought to your attention at the perfect time, when you will be ready to accept and act on them. This is exactly what happened to me on January 16, 2012. I started my day with the same activities most families start their day with (or so I thought they were that morning) like breakfast for the kids, packing lunches, combing my daughter’s hair then heading off to work. I sat down at my desk, opened a news page on the Internet and one particular story caught my eye. Maybe it was the photo attached to the story, maybe it was the title, I believe it caught my attention because it was simply put there for me to find just that day at just that time. So, I naively clicked on the link to the story and began reading about a sweet boy who had lost his life to a disorder I had never heard of. The boy, Tripp Roth, had been born with epidermolysis bullosa (EB) and had died at just 2 years 8 months old. Having never heard of EB, I began reading more posts by Tripp’s mom on her blog. Let me just tell you, it was VERY hard to focus on anything but Tripp and his brave story the rest of the day. After we got the kids to bed that night, I began my pursuit of learning everything I could about EB.
The more I researched, the more I realized I had been made aware of a reality I could never imagine. The pain those affected by EB endure daily and the endless wound care required is enough to send my head spinning. The families EB has affected are the strongest I have truly ever known. After only breaking the surface of learning about EB, I realized I had to start spreading awareness so others could also be made aware of the need for research funding and family support.
I was fortunate enough to get to travel to Minnesota in the summer of 2012 (with a group of AMAZING ladies) to meet a doctor researching to find the cure for EB. Getting to talk to Dr. Jakub Tolar about his work was incredible. This amazing Dr took time out of his busy schedule to meet with us and literally began the conversation asking each of us our story and how he could help us in our advocacy efforts. The passion Dr Tolar has for his work is truly inspiring. He is completely devoted to finding the CURE for EB. What a truly incredible man!
I have attended and supported numerous events held either to raise funds for research or to provide monetary support for a family dealing with the everyday EB has to offer. I try to take any opportunity I may have to bring awareness to EB whether it be by leaving an information card with our dinner bill or starting a conversation with someone noticing the I Refuse t-shirt I’m wearing.
Learning about EB has changed my life. My hope is that I can make a small difference in the lives of the families affected by EB in whatever capacity possible. My desire is to see the day the CURE is found. I refuse not to share the knowledge I now have of EB and the reality faced by families affected by EB.