As of immediate effect, parents of children with cancer or other serious illnesses like EB, who require care at home, will now be able to claim benefits for their loss of income. Up until recently this could only be claimed if the child was hospitalized. In this important move, EB has now been added to the list of 110 recognised serious illnesses.
This is a huge step forwards in acknowledging the needs of families with children with EB. Caring for children with a serious illness has huge repercussions, physically, emotionally and financially and it is often incompatible with working full time.