It’s EB Awareness Week! Meet My HERO!!

October 28, 2011 By Tracy

Let me introduce you to my HERO, Tripp! Tripp is the most amazing 2 year old that I know…a living miracle really.  You see, Tripp was born with a very rare genetic skin disease called Epidermolysis Bullosa “EB.” Any type of friction on his skin or mucous membranes causes blisters. He was not even expected to live to see his first birthday. While Tripp has reached many milestones in his life he continues to live each day in extreme pain….extreme pain that most of us will never know in our entire lifetimes.

Tripp has a trach, so he can’t speak, but he is super smart and knows lots of sign language. He’s also lost his sight, but he is quite the “little drummer boy” (you must watch some of his videos). His bathes are so painful that he has to be sedated, and yet is still in pain. Somedays, he is in so much pain his mom literally rocks him all day. Why do I tell you all this? Because EB is a bad, horrible, terrible, mean, unfair, (I could go on) disease, BUT despite all the bad stuff…despite all the pain…

….somehow, someway, Tripp finds strength…strength to live, to push on, to live life to it’s fullest.  I can tell you following Tripp’s story, has truly put things into perspective for me. Bad days, well, they don’t seem so bad after all. I thank God everyday for my healthy children, but I pray everyday that a cure to this disease will be found, and one day Tripp can know what it is like to be a healthy little boy.

Here’s someone else I’d like for you to meet, Courtney, Tripp’s (amazing, wonderful, caring, (I could go on)) Mom. I can’t imagine what Courtney has to endure on a daily basis, but I do want to thank her, for not only being the most amazing mom ever, but for sharing her little joy with the world. Thank you Courtney, for this my life will never be the same.

I encourage you to read Courtney’s blog here. Their story is truly a remarkable one.

As I mentioned before this week is EB Awareness week, and I ask that you take a few minutes and watch the video below. If you would like more information on EB you can visit DEBRA.org. If you’d like to make a donation, this week you can text TRIPP to 50555 and a donation of $10 will be added to your wireless bill going straight toward EB Research through the Minnesota Medical Foundation at the University of Minnesota.