Epi – what? Those were my first thoughts when I came across those two words that have forever changed my life. Epidermolysis Bullosa. That is a mouthful – and like most people I know, it was something that I had never heard of.
So much has happened in over a year – but I can clearly remember when I first discovered EB. I’m not sure where I came across the photo (maybe on Pinterest) – but it was literally the photo that spoke a thousand words. It was a photo of a small child’s hand caressing a mother’s face – the tiny baby hand appeared to be burned. I clicked on the photo and it brought me to a blog….”EB’ing a Mommy.” I spent hours that day reading about Tripp and Courtney Roth. It was something so awful that I could not fathom the pain that Tripp was suffering – or the agony that Courtney was going through caring for her baby boy. I read Courtney’s blog every so often, but not on a daily basis – it was something that I checked in on every once in awhile. And then it happened….January 16, 2012 I dropped the boys off and returned home to start working. I clicked on the internet…..and across the news-feed I read the headline, “Boy with Rare Skin Disease Dies.” I instantly knew it was Tripp. I clicked on the story and read of Tripp’s passing just two days before. I returned to Courtney’s blog and spent hours reading up on what I had missed since the last time I had visited. I was devastated. I don’t know how else to explain it, I could not stop crying. I called in sick to work – I went and picked up my boys early and held them tighter than ever before. From that point on – I made it my mission to learn as much as I possibly could about EB.
I had started following many pages on Facebook about EB. One of them was EB Part of the Cure. I noticed many people were asking about bracelets or fundraisers in honor of Tripp. I decided to step out of my comfort zone and become involved. I had wristbands made that said “Cure EB” and “Remembering the EB Angels”….. my plan was to sell them and donate the funds to PUCK. I figured the amount of money I raised through selling wristbands was more than the money I could donate personally – so I found a website and ordered them. I’m not sure why – but I was definitely very nervous about what I was venturing into. I came across another page on Facebook – the “I Refuse” event…..at the time, it was still an event in the making – but it was aimed at raising awareness, and I knew I wanted to help if I could.
Well, long story short – this all was the start of something that I have become very passionate about. I have met and worked with some AMAZING advocates – and have come a long way from where I was a little over a year ago. At the time – I had no idea what I was getting into – or what I had to offer – but I decided that I will just do what I can – and help where I can – to help these families dealing with EB. I think that many people are afraid to get involved in anything outside of their comfort zone – because they feel like they have little to offer – so instead, they do nothing at all. But the truth is, everyone can do SOMETHING to make a difference. In June, I put on an online auction to raise money for costs associated with Jackson’s BMT. In August, I finally met my fellow advocates Christie, Melinda, Sooann, and Andrea in Minnesota and we had the opportunity to meet Jessica and Jackson in person and talk with Dr. Tolar. He is truly an amazing and compassionate man. From running in honor of Aubrey in Michigan, raising thousands for DEBRA to the Wings of Hope Luncheon in MN to raise funds for PUCK, to helping out local families dealing with EB in my own town – I have decided I will do whatever I can to raise awareness and help families dealing with this awful disorder.
Every time someone with EB passes and another precious baby with EB is born, my heart breaks a little more. Epidermolysis Bullosa is the most unimaginable disorder that I know about…..which is why I have decided to advocate for these precious families. More awareness, equals more funding, equals more research, equals….one day – a cure. I pray that in my lifetime – I will see a cure for EB.
Kerri said it best…..”One person can make a difference, everyone should try.” If more people acted on this – we would all be in a better place.