Dr. Sin?ad Hickey:

It includes bandages, hospital visits and everything. Debra supports people with grants as much as we can, but there is a huge financial burden. If you have a new baby born with EB, you have lost the life you knew before. Most of them are inherited recessively, so they have no idea before the child is born that they have EB. A parent usually has to give up their life, their work to care for the child, so there is a loss of earnings for the parent from having to give up work. There is no contribution from the child because when they grow up, they will not work either. There are hospital stays, bandaging costs, costs for PAs and home nursing care. It all adds up.