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

 

Also, Loan Interest: Productivity Commission On Tertiary Education

Key recommendations include better quality control; making it easier for students to transfer between courses; abolishing University Entrance; enabling tertiary institutions to own and control their assets; making it easier for new providers to enter the system; and facilitating more and faster innovation by tertiary education providers... More>>

ALSO:

Higher Payments: Wellington Regional Council Becomes A Living Wage Employer

Councillor Sue Kedgley said she was delighted that the Wellington Regional Council unanimously adopted her motion to become a Living Wage employer, making it the first regional council in New Zealand to do so. More>>

ALSO:

Scoop Images:
Dame Patsy Reddy Sworn In As Governor-General

This morning Dame Patsy Reddy was sworn in as the New Zealand Realm’s 21st Governor-General. The ceremony began with a pōwhiri to welcome Dame Patsy and her husband Sir David Gascoigne to Parliament. More>>

ALSO:

Ruataniwha: DOC, Hawke's Bay Council Developer Take Supreme Court Appeal

The Department of Conservation and Hawke's Bay Regional Investment Company (HBRIC) are appealing to the Supreme Court over a conservation land swap which the Court of Appeal halted. More>>

ALSO:

With NZ's Marama Davidson: Women’s Flotilla Leaves Sicily – Heading For Gaza

Women representing 13 countries spanning five continents began their journey yesterday on Zaytouna-Oliva to the shores of Gaza, which has been under blockade since 2007. On board are a Nobel Peace Laureate, three parliamentarians, a decorated US diplomat, journalists, an Olympic athlete, and a physician. A list of the women with their background can be found here. More>>

Gordon Campbell: On The Key Style Of Crisis Management

At Monday’s post Cabinet press conference Key was in his finest wide- eyed “Problem? What problem?” mode. No, there wasn’t really a problem that top MPI officials had been at odds with each other over the meaning of the fisheries policy and how that policy should be pursued... More>>

ALSO:

Mt Roskill: Greens Will Not Stand In Likely Post-Goff By-Election

“The Green Party’s priority is changing the Government in 2017, and as part of that we’ve decided that we won’t stand a candidate in the probable Mt Roskill by-election... This decision shows the Memorandum of Understanding between Labour and the Green Party is working." More>>

ALSO:

Get More From Scoop

 

LATEST HEADLINES

 
 
 
 
 
 
 
 
 
Politics
Search Scoop  
 
 
Powered by Vodafone
NZ independent news