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 Anti-Corbyn Split In British Labour

The resignation of seven UK Labour MPs in protest against the leadership of Jeremy Corbyn is another example of the centre-left’s readiness to sabotage its own cause – such things are always allegedly done on principle – even if the outcome hands the country over to Conservative rule for five more years.

Certainly, a technician hot-miked at the splitters’ press conference was pretty sure this would now be the outcome, and he accidentally informed the nation to that effect. More>>

 
 

Auckland Action Against Poverty: Motels Profit From Housing Crisis

A single motel which charges up to $1,500 per week per room has received over $3 million worth of Government funds to provide emergency assistance, despite never having a Code Compliance Certificate – an offence under the Building Act – and receiving a series of longstanding complaints from occupants... More>>

ALSO:

Gordon Campbell: On The Alleged China Relations Crisis

If New Zealand’s relations with China are ‘deteriorating’ then you still need a microscope to detect the signs... More>>

ALSO:

Environment: Government To End Tenure Review

“Tenure review has resulted in parcels of land being added to the conservation estate, but it has also resulted in more intensive farming and subdivision on the 353,000 ha of land which has been freeholded. This contributed to major landscape change and loss of habitat for native plants and animals,” said Eugenie Sage. More>>

ALSO:

Bell Tolls: Big Changes, Grand Mergers Planned For Vocational Training

“At a time when we’re facing critical skill shortages, too many of our polytechnics and institutes of technology are going broke... More>>

ALSO:

Sallies' State Of The Nation: Progress Stalled In Reducing Inequality

The report shows a lack of tangible progress in key areas including record levels of household debt and a growing gap in educational achievement between poorer and more well off communities. More>>

ALSO:

Party Politics In Tax Morale Survey: SSC To Seek Answers From IRD

Minister of State Services Chris Hipkins has today asked the State Services Commissioner Peter Hughes to examine IRD’s reported inappropriate use of a public survey. More>>

ALSO:

 
 
 
 
 

LATEST HEADLINES

  • PARLIAMENT
  • POLITICS
  • REGIONAL
 
 

InfoPages News Channels