(Unrelated) Addition: The National Geographic Channel (276 on DirecTV) will be airing Extraordinary Humans: Skin this afternoon at 4:00 EST. Half of the episode is on a child with EB and half is on a child with Icthyosis, another rare genetic skin disorder. We actually have a friend, here in town, who has Icthyosis that we met after Jonah was born. Please watch or DVR if you can. Sorry for the late notice.
If you don't know much about the Bone Marrow Transplants being done as a (hopefully someday soon) cure for Epidermolysis Bullosa, please see Bella's dad's most recent post here.
It is amazingly clear, easy to understand and walks you through the basics of the process (as well as the risks). But he also does a great job of expressing the emotion that goes along with this journey they're on and how faith will see them through.
Daylon (the first JEB child to go through transplant) will undergo his transplant on Thursday of this week. He's already been undergoing Chemo for eight days (I think), so you can imagine the tough time he's having right now. He gets a one day "break" (tomorrow) and transplant will be on Thursday.
Bella is being admitted to the hospital today, and will begin treatments immediately. She will begin anti-seizure meds (to counteract one of the chemo drugs) immediately and chemo will start tomorrow. Her transplant is scheduled for July 2nd.
I know I've already asked for prayers for these kids, but I want you to really understand what they're about to go through and the toll it will take on them and their families. I want them to know they are not alone... so please, I'm begging you, follow their stories (here and here) and keep lifting them up. This is a very long road they are about to travel. Assuming best case scenario, the kids' immune systems won't be back to normal for a year. And the stay in Minnesota will be four to six months at best.
I know we've never met, but I love you guys.
Praying for healing, strength, and peace...