Meeting Up With DEBRA
Roger McClay Commissioner for Children
Recently I met DEBRA. No, not Deborah Morris (although I do know her), but the magnificent people of the Dystrophic Epidermolysis Bullosa Research Association.
It is one of those associations you want to be associated with because they are so dedicated to a cause which is about as worthy as causes can get.
DEBRA is really a network of families who seek to promote and protect the interests of Epidermolysis Bullosa sufferers in New Zealand.
Epidermolysis Bullosa means "breaking and blistering" of skin. It is a rare genetic condition and non-contagious.
We have five children in New Zealand with severe EB. Each of them lives with constant pain. Their bodies are covered in layers of scars and blisters. Their internal membranes are damaged by abrasive food.
In New Zealand our young sufferers of EB are Samantha (2 years), Damien (3 years), Holly (5 years), Ashley (13 years) and Humphrey (18 years).
I have met Humphrey. He is an intelligent, articulate brave young man.
In fact they are all remarkable young kiwis… courageous, loving and fragile.
Everyday these young heroes are wrapped from head to toe with special protective dressings. 2-3 hours per day, every day, it takes to do this.
Their little limbs are like match-sticks and their skin looks like it has been roasted on an open fire.
No mainstream charity helps these five children.
I am going to help them. So is the Hon Deborah Morris. I wondered if you would too?
Each child needs to get to a special clinic in the United States sometime. All of them need a fund to help research, and future sufferers.
There is going to be an Epidermolysis Bullosa awareness week.
We are going to blatantly ask for money for these DEBRA children.
WILL YOU HELP TOO? If so send as much money as you can to: "Anna", 123 Daniell Street, Newtown, Wellington. (She is one of the DEBRA Mum’s.) Or to me: Hon Roger McClay, Commissioner for Children, PO Box 5610, Wellington.
This is one Debra worth supporting. Five brave young Kiwis deserve the help of our whole Nation.
Office of the Commissioner for Children
Level 12, 86-90 Lambton Quay
PO Box 5610