Speech
DEBRA New Zealand Trust
For more photos at this event, click here.
I begin by greeting everyone in the languages of the realm of New Zealand, in English, Māori, Cook Island Māori, Niuean, Tokelauan and New Zealand Sign Language. Greetings, Kia Ora, Kia Orana, Fakalofa Lahi Atu, Taloha Ni and as it is the afternoon (Sign)
I then specifically greet you: Neville Carson, Chair of the DEBRA New Zealand Trust, Anna Kemble Welch, Director of the DEBRA New Zealand Trust; Distinguished Guests otherwise; Ladies and Gentlemen.
It is with much pleasure that my wife Susan and I welcome you here to Government House Vogel for this afternoon tea to mark the 30th anniversary of the establishment of DEBRA New Zealand.
We will also be attending this evening a function at Parliament hosted by Dr Jackie Blue MP on behalf of the Hon Tony Ryall to mark the anniversary as well as the 10th anniversary of the establishment of the New Zealand Organisation for Rare Disorders (NZORD).
We have with us today some special guests. The first is Jillyan Hing who founded DEBRA New Zealand 30 years ago.
When Jillyan’s niece Shelley was diagnosed with severe Epidermolysis Bullosa or EB she began the work of bringing together the New Zealand families affected by this rare condition.
Through that work the small but successful organisation that supports great many families throughout New Zealand is a lasting legacy. Thanks are due to you Jillyan for everything you have done.
Sadly Shelley died a few years ago, but it is a pleasure to welcome her parents Graeme and Lynne Passey who have travelled all the way from Queensland to be here today. Graeme and Lynne, thank you for being here in New Zealand for these events.
As everyone here knows only too well, Epidermolysis Bullosa is a very rare genetic condition in which the skin and internal body linings blister at the slightest knock or rub, causing painful, open wounds.
At its mildest, the blistering is confined to the hands and feet making holding things and walking activities that are extremely painful. In more severe forms all the body is affected and the wounds heal very slowly, giving rise to scarring, physical deformity and significant disability.
I would like to take the opportunity to acknowledge and salute those living with EB, several of whom are with us today.
Despite the difficulties those with EB face, in reading a number of their stories on the DEBRA website, I have been struck by their courage and determination to live their lives to the fullest.
I also would like to acknowledge their families. Caring for a loved one with EB is not easy and I commend you for your fortitude and strength.
Finally, I want to commend the DEBRA New Zealand Trust. Because EB is relatively rare, ensuring that those living with the condition receive the care and support they need requires concentrated work.
Without the support of DEBRA New Zealand, those living with EB, and particularly their families, could easily feel isolated.
DEBRA plays a vital role in effectively “connecting the dots”. By that I mean that it ensures the latest information and research on the care and treatment of those with EB is distributed to those living with EB, their families and health practitioners. It also connects families and individuals so that they can support each other. It also plays a key role in lobbying politicians and government agencies to ensure that those living with EB get the services they deserve.
It therefore gives me great pleasure, as your Patron, to congratulate the DEBRA New Zealand Trust on the occasion of its 30th anniversary. By helping the few to live a full life among the many, you help make our world a better place. The phrase of Mahatma Gandhi about the benefit of losing yourself in the service of otehrs comes to mind.
And on that note of congratulations, I will close in New Zealand’s first language by offering everyone greetings and wishing you all good health and fortitude in your endeavours. No reira, tēnā koutou, tēnā koutou, kia ora, kia kaha, tēnā koutou katoa.
I would now like to invite Jillyan to speak.