Sometimes I try to show the ugly sides of EB because it is horrible, and I want to share, so that you will share with others and EB research will get the funding it needs to find a cure.
Despite the fact that Kiira has RDEB-HS, I know she has been more fortunate than many other babies. I didn’t know if she would live for a week, a month or a year. I didn’t know how I would survive dealing with it, watching her skin peel back with the slightest friction, poking her with needles (which used to make me feel like I’d pass out), doing daily bandage changes, and watching her suffer. But nearly 8 months later, here we are–both surviving, with smiles on our faces no less. She hasn’t had breathing problems or too many eating issues and she rarely has infections, but RDEB gets progressively worse. That’s why we MUST do something for Kiira. I can’t wait for her to need throat dilations, a wheelchair, hand and feet surgeries, to be on pain, anti-itch and antibiotics on a daily basis, or any of the other numerous side-effects of EB. That’s why this post by an EB mom on Facebook confirms my belief that a BMT is the best route for Kiira. I pray for the best outcome, but whatever happens, I will know we tried our best option available at this time.
These kids need a break from the pain. EB needs a cure. EB Research Partnership