Gordon Campbell | Parliament TV | Parliament Today | News Video | Crime | Employers | Housing | Immigration | Legal | Local Govt. | Maori | Welfare | Unions | Youth | Search

 

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
Lambton Quay
WELLINGTON


© Scoop Media

 
 
 
Parliament Headlines | Politics Headlines | Regional Headlines

Gordon Campbell: On The Tax Working Group’s Road Map

Trying to analyse the interim report on the Tax Working Group (TWG) is like trying to review an entire All Blacks game, but at the half- time mark.

With so much still to be finalised, Sir Michael Cullen and his colleagues are going to need all the All Blacks’ fabled finishing skills to get a coherent, fiscally neutral package together by the February 2019 deadline. More>>

 

Meth Testing Report: Housing NZ "To Right Wrong"

Phil Twyford “Housing NZ acknowledges that around 800 tenants suffered by either losing their tenancies, losing their possessions, being suspended from the public housing waiting list, negative effects on their credit ratings or, in the worst cases, being made homeless.” More>>

ALSO:

No Reshuffle: Meka Whaitiri Removed As A Minister

Meka Whaitiri will be removed as a Minister with immediate effect... The decision was made after receiving a report into an incident that occurred on 27 August in Gisborne, involving Meka Whaitiri and one of her staff. More>>

ALSO:

Pay Equity Bill: Making History For Women’s Pay

The Equal Pay Amendment Bill, introduced to the House today, will make it easier for workers to make a pay equity claim , using a more simple and accessible process within New Zealand’s existing bargaining framework. More>>

ALSO:

Suffrage 125: NZ A Trailblazer For Women

“We acknowledge the work of Kate Sheppard, Meri Te Tai Mangakāhia, and all of the suffragists who tirelessly campaigned for the vote… Today we also need to ask each other: how we can continue to make our country a fairer and better place to continue the legacy of the suffragists.” More>>

ALSO:

Asylum: Refugee Quota Increasing To 1500

“The quota increase will take place from July 2020. In the meantime, we will work to increase the number and spread of refugee resettlement and support services. We need to make sure we’re prepared for this change in policy.” More>>

ALSO:

 
 
 
 
 

LATEST HEADLINES

  • PARLIAMENT
  • POLITICS
  • REGIONAL
 
 

InfoPages News Channels