We live at a severe economic disadvantage because of the high costs of living with EB. Not just the bandages and ointments that aren't covered by insurance, but even the little things like needing to keep the AC at 70 year round because Cassie overheats from all the bandages.
EB has affected pretty much every aspect of our lives. It has a very similar affect on the lives of everyone who lives with it. There is currently no cure or treatment other than protecting the skin as much as possible through bandaging. The experimental bone marrow transplant is still years away from being a viable treatment. The only chance of medically improving the lives of those with EB is through research, and research takes money.
A few links to share for awareness week:
Cassie's Google Page by Sean Fannon
The Butterfly Fund -- Our Family's Favorite EB Charity
PUCK- Pioneering Unique Cures for Kids
Heal EB Foundation
Cassie's hands, or her "paws" as she calls them since her fingers are bound to her palms by scar tissue. This is called a "mitten deformity"