Betty and I have been reading about a little boy named Tripp Roth for a couple of months now. We read about it on a blog called "EB"ing a Mommy, beautifully written by Tripp's mother Courtney. Tripp has a disease called Epidermolysis Bullosa which basically means that he doesn't produce the right amount of collagen, which connects the two outermost layers of the skin, so anytime his skin moves - when he smiles, walks, turns over, grabs something, blinks - the layers of his skin rub against each other and form blisters. Basically, the more he moves, the more blisters he gets, and so his body is covered with blisters, as you can imagine.
Children with Epidermolysis Bullosa, or EB for short, generally don't live very long. Tripp's particular type of EB is termed "Junctional," and kids with Junctional EB have a life expectancy of around 2 years. We're hoping that Tripp is going to buck that trend. He's already almost 2 and half.
Courtney and Tripp live in Ponchatoula, which is about a 45 minute drive from Baton Rouge. The fact that they live so close means that we know people who are from Ponchatoula or still live there, and they know or at least know of Courtney and Tripp. So this story really hits close to home.
Courtney's blog serves several purposes: to put her emotions down on paper, to help spread Tripp's story, to make people aware of Epidermolysis Bullosa, and mainly just to ask people to pray for Tripp. And it's working. Betty and I pray every time we read or even think about Tripp. Courtney's love and dedication to her son is really moving. I've teared up several times reading her blog posts and poems.
So Courtney's asking for prayers, and Betty and I are more than happy to pray. But we want to do something more. I don't know if there's a fund for Tripp or not, but lately there have been some prayer vigils and I think some fund raisers for Courtney. If anyone reading this has some more info on where to send money or when the next event to help raise money will be, please leave a comment.
Betty and I are so thankful to have two beautiful, smart, creative children. We have a great life. I have a good job, enjoy my work, and although money can be tight sometimes, we're always aware that we have more than we need. But there are many days when I'll be in a bad mood or something small will set me off, and then I'm just a miserable person to be around for a few hours. But then I read Courtney's blog, and I really feel like I'm going through many of the same emotions that Courtney is - love, fear, despair, hope... and it puts everything back into perspective for me. Nothing other than our family and our health really matters. Everything is just extra. We need to enjoy our time together, because we don't know how long it will be, and we should be thankful for it.
I hope we find a cure for EB. I hope Tripp gets better. Tripp, buddy, you have our prayers.
Courtney, my heart goes out to you and your family. You are an incredible person. Please keep us up to date on our little Tripp.
By the way, Tripp's story is gaining traction. Recently, Elmo (yes - THE Elmo) recorded a song just for Tripp. I mean, if that doesn't make you love Elmo even more than you already do, then I don't know what will. You can check out Elmo's song for Tripp here.