I was born, raised, and still live in a small town (city) in South Louisiana. Growing up I’ve referred to Ponchatoula as a place where everyone knows each other. Through the years, our town has grown and everyone knowing each other is not completely the case anymore. Even though we may not all know each other, we are still a community that comes together in support of each other when needed. This was the case when we all fell in love with Tripp Roth. Many of you reading this already know his story. If you don’t you can read his mommy’s blog at randycourtneytripproth.blogspot.com Tripp’s story was one that pulled at my heartstrings. You see I was blessed to live in the same community as him, I learned of EB because of him. I’ve known his family all my life and had it not been for him, I’d probably still not know about EB.
I remember in July 2011, when Tripp was having a very rough time, I wanted to do something, anything to help him and his family. I remember waking up the day that (if you were following Tripp’s story at the time) you noticed almost everyone on your friend’s list had changed their profile picture to a picture of Tripp’s hands folded together as if praying with the words PRAY 4 TRIPP. I was going to mass that day and wanted to get a group together to pray the rosary afterwards. Because I am not comfortable leading it, I called Tripp’s great grandmother and she agreed to go to church with me and lead the rosary. On the way to church, I told her, I felt like all I could do was PRAY, yet that seemed like it was not enough. I know that prayer is the most powerful gift we can give to anyone, yet I struggled because I wanted to do something that would make Tripp’s pain go away. This is one of the hard truths of EB, the people who have it SUFFER. They live a life of pain yet still manage to smile. Their parents lives consist of sleepless nights, devoted care to their children, emotional and mental exhaustion, yet in most every blog of an EB parent, they tell their readers they FEEL the prayers. How comforting is that for me and the other prayer warriors out there to know that our prayers are working.
In December of 2011, just a month before he passed away, Tripp, was named the Grand Marshall of the Christmas parade in a neighboring town. Because he couldn’t be there, his mommy rode in his spot and behind her was a float with so many of his “fans”. My family and I were blessed to be among the riders. In June of 2012, I joined forces with the amazing, Christie Zink, in her efforts to raise money for EB research. She was able to far exceed her fundraising goal and I look forward to helping her through my Pampered Chef business once again this year.
I have a shirt for everyday of the week that in some way represents EB. On our vacations to Disney World, I pack them along with my EB Awareness cards (you can purchase them from this site). On our most recent trip to Disney, we were on the bus and my little girl handed one of Tripp’s cards to a lady seated next to her. She turned it over and with a look of bewilderment on her face and said, I read his mommy’s blog. What a small world?! I don’t feel that it was a coincidence that we sat next to this lady who had knowledge of EB because of Tripp. I pray that soon instead of it being said that EB is the worst disease you have never heard of, it will be the disease that FINALLY has a CURE. Will you join me in spreading awareness?