Bond goes more than skin deep for EB family
With skin as fragile as a butterfly, the Mark family from Levin have chosen an unusual family business – stone masonry and funeral directing.
Three-week-old Grayson, 16-month-old Lachlan, their father Chris, grandfather Dennis, and great-grandfather Ian all suffer from the rare genetic condition Epidermolysis bullosa, more commonly known as EB. The disorder causes blistering and tearing of the skin from even the gentlest friction.
"It's like the glue in the skin doesn't work properly," said Anna Kemble Welch, director of Debra New Zealand, the support group for EB sufferers.
Debra NZ celebrated its 30th birthday with a function at Parliament last night. The Government was expected to announce funding for three part-time nurses to help train people in treating EB sufferers.
Ms Kemble Welch said that, although the Mark family had a mild form of EB, in severe cases it could kill babies within a year, as internal organs were too thin to function. Other sufferers had badly scarred hands that needed constant bandaging. Severe EB affected about one in 300,000 people, with less severe forms affecting one in 20,000, some of whom would not know they had it.
Chris Mark gets cut daily while doing stone masonry. "You learn to live with it. I find that when I rush is when I get the most cuts."
Both Grayson and Lachlan were born with skin missing from their feet but that is improving.
The Dominion Post