DebRA New Zealand : Profiles

In New Zealand there are a handful of children and young adults with severe EB
(Epidermolysis Bullosa) as well as other children and adults who have fewer bandages but whose lives are still very affected by their EB.
Click on the links to read some of their stories.

Humphrey, Ashley, Holly, Damian, and Samantha.

They are remarkable kids – strong, courageous, determined, loving and very fragile – wanting to lead 'normal lives'. Despite coping with extraordinary pain all the time, they live their lives as fully as possible.

Our severe Dystrophic EB kids are wrapped from head to toe with special protective dressings. Every day these dressings must be removed, they soak in a bath to clean their wounds, then new sterile bandages are applied. This takes three hours every day.

As they grow older their hands close up and their fingers fuse together. Their limbs are like match-sticks. Their skin looks like it has been roasted on an open fire.

For those with severe Simplex EB, heat makes the blistering worse, so thick padded bandages are not an option for protecting them from the little knocks and bumps that cause big blisters.

Very few New Zealanders have any contact with our EB kids. Most of us probably assume that, like many other disadvantaged NZ children, they are supported by main-stream charities.
But our EB kids are different.
Their special needs don't fit easily within mainstream charities. And because we have so few EB sufferers in NZ, it's extremely difficult to achieve wider awareness of their fight.
Fund-raising is not easy.

Humphrey (26yrs)

Humphrey is the 'big brother' of the group. He is a young man looking to be independent and live life as fully as he can. His next major challenge could be skin cancer. Kids with severe EB who make it to their 20s often die from skin cancer.

Humphrey is currently a full-time university student on exchange to Japan. Once again he is breaking new ground for students with disabilities by being one of the first to go on an international exchange.

Ashley (20yrs)

Ashley, who had his left leg amputated because it was too sore to leave dangling – has the driest sense of humour you could possibly imagine. Ashley recently moved to Auckland to study radio production, following his success at running his own radio station from a caravan at home in Waipu.

Holly (11yrs)

Holly lives in Christchurch with her mum and dad and brother Matthew. Holly enjoys creating a teddy bear at the Bear Factory as part of the DebRA NZ family camp in Christchuch in April 2008.

holly

Damian (8yrs) Samantha (7yrs)

Damian and Samantha are a couple of little tear-aways. They love mucking around on the small dairy farm in the Taranaki where their mum and dad work. They are forever banging themselves (as most young kids do) but for them, it really hurts.

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