Last night I stumbled across a blog, that I ended up staying up until 1am (in mommyland that is LATE) to read from the beginning. The blog, “EB”ing a Mommy, chronicles the day to day life of Tripp and is written by his mom Courtney. Tripp was diagnosed with a rare genetic skin disease called “EB”. Tripp’s skin is so fragile that the slightest friction can cause severe blistering—inside and outside the body. Baby Tripp eventually lost his eyesight and battles infections on a regular basis. This skin disease, as you can imagine, is extremely painful and Courtney does her best to keep Tripp as comfortable as possible with help from their doctors. Sadly, there is no cure for “EB” and specialists predicted that Tripp would not live past a year – he’s two now and fighting for his life.
You have to watch Tripp drumming along to Elmo’s song in a recent post, you will fall in love with him. He is a beautiful boy. He is so lucky to have a (super)mom like Courtney, who has quit her job to devote her life to her child – to live each day like it is the last. Imagine being told that your perfect newborn baby had a rare disease, had maybe a year to live and would require around the clock care. I can’t even fathom what that must have felt like, what Courtney must feel on a daily basis. Her insurmountable faith, that is apparent in her writing, is incredibly inspiring.
Logan has a little (airplane germ) cold and has been a grumpy, cranky, clingy child for the past few days. I’ve been a grumpy and cranky mommy for the past few days…until I came across Courtney’s blog. My worse day with Logan would probably be the absolute best day for Courtney and Tripp. Today I enjoyed my child – grumpy, cranky, clingy and all. He napped on me and I got absolutely nothing done…and it was perfect. I held him tight and said a quiet little thank you prayer for that moment.
I’d never heard of this skin disease before last night, as I’m sure most of you haven’t either…which is why I’m blogging about Tripp’s story. I want to help Courtney get the word out. This story touched my heart, especially as a mother to a toddler around Tripp’s age. I needed to do something. Maybe someday there will be a cure for this disease or at least better treatment. So, what can you do? Here are a few suggestions:
- Reader’s Digest is hosting a contest and Courtney could use your votes. The winner would get their story published, along with a cash prize. I’m sure Tripp’s care is racking up those doctor bills and this family could use the money. This would also be a great opportunity to raise awareness for this rare disease. Vote HERE.
- Print out “Trick-Or-Treat for Tripp” flyers and hand them out on Halloween. Tripp can’t go Trick-Or-Treating because he has to stay away from germs, so let’s Trick-Or-Treat for him and spread some awareness along the way.
- Donate to or get involved with Debra, a non-profit organization dedicated to finding a cure for EB.
- Pray for Tripp.
