I've been remiss: EB stinks, so get on the train for a cure

It's Epidermolysis Bullosa (EB) Awareness Week, and I've been meaning to put up a post all week and just haven't gotten to it. (Jonah, please slap me.)

Epidermolysis Bullosa (EB) is a rare genetic skin disease that causes the skin to be so fragile that the slightest friction can cause severe blistering – inside and outside the body. Today there is no cure. Severe forms of EB cause patients to live with constant pain and scarring. The worst forms of EB lead to eventual disfigurement, disability, and often early death.

If you've never heard of EB before, then 1) you must be new to my blog, and 2) you're missing out on knowing some of the bravest kids you'll ever meet. One of them is our great-nephew, Jonah.

Grayson was born many years after his sister and brothers, so he's only a few years older than some of his nieces and nephews. And since I'm a few years younger than Grayson, that makes me the same age as several of them. Matt and Patrice, while a little bit younger than that, still have children who are our kids' ages. Patrice and I celebrated our pregnancies together when I was expecting Jake and she was expecting Gabe. When Gabe was stillborn, it rocked our family to its core. I had 2-week-old Jake in my arms when Grayson told me the news, and we held each other and Jakey as we cried together.

 

We rejoiced with Matt and Patrice when they told us they were expecting another baby, and Jonah has been nothing but a blessing to our entire extended family. The fact that he has EB is the first thing people notice about him physically, but it's completely secondary to who he's become as a person. Jonah is AMAZING in every way, and Matt and Patrice are the most capable, caring parents that the Lord could have chosen for him.

 

Through Matt, Patrice and Jonah's journey, I have been privileged to meet other EB babies. We lost one beautiful baby girl, Bella, earlier this month, and I've shed many tears for her and her family. I also follow Daylon's and Tripp's stories and have the utmost respect for their families and the persistence and vigilance it takes JUST to get through each day.

Please join me in prayer for these and the countless other families who fight the good fight day in, day out, and if you are so led, please consider contributing toward a cure for these beautiful children through DebRA or follow the link in my sidebar to purchase a magnet for your car. You can learn more about DebRA and EB here.