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Hi there all

I have the awesome privilege of being able to tell you about my experience of going to the NZORD conference in Wellington, New Zealand, 1^st–2^nd November 2007, a first ever for me.

My role is as a parent with two boys (Tasman 9 and Billie 4) who have a “rare disease” called Metachromatic Leukodystrophy, a Lysosomal storage disorder which is at best hideous as they all seem to be. We have the great responsibility of trying to communicate with the world around us about our lives and our needs (so that they can make informed choices as to how best to help us and others like us). We need to communicate through the medical/scientific communities, through the political/ethical communities, through the support networks available, and through other families (often at “genetic” risk unbeknown to them). The overwhelming concept of which to the individual is a staggering task.

Attending the NZORD conference I felt empowered and strengthened by the dedicated and loving work of the medical/scientific specialists. I felt connected through the presentation of another parents work heading the Fragile X trust. I felt enthused by the hope of new developments that showed brain cell regeneration was possible, despite many conditions and setbacks. I went home and added blueberries to the shopping list after my sisters insisting that they are good for the brain…just maybe there is something to try to somehow slow down the rampage of the disease in my youngest sons brain before it gets severely damaged like his older brothers, to keep him holding on long enough for technology and science to come up with “the cure”…Hope, the sustaining need of us all that somewhere somehow things are able to change. Hope, that combats the hopelessness that makes us not much use to our families. Hope, that says tomorrow could bring about a better today. This is priceless. Thank you so much for all everybody does to bring hope back when at times it seems like “there is no cure”.

Awed at the sophisticated level of presentations, awed by the huge ethical implications of much of the technology, forever grateful for the hard work of all those involved. How can you give back to people who give so much? How can one person help? For me personally I found myself compelled to offer prayers to the Lord for guidance, for prayers to uphold the organisation of NZORD as they walk boldly into un-chartered territory aiming to improve the quality of life for those already affected by rare diseases, and to provide needed support through screening programs and other technologies, for undiagnosed families who have no clue how radically shocking there lives are likely to be, while they are oblivious to what genes they are carrying. Many have said you don’t know what someone else’s life is like till you have walked a mile in their shoes….NZORD have got blisters upon blisters from thousands of miles of hard slog and I believe they want to share their knowledge to avoid others the extreme pain of walking with a severe limp. I am so impressed, so very very impressed. I hope to be able to contribute more in the future when my role as mum/caregiver/nurse to my two boys allows me to. For now I have learnt what wonderful things can happen when people work together for the common good of all. I endeavour to pray the way open for NZORD and their extremely essential work.

Loved the venue and the networking opportunities over some delicious food breaks. WOW! What a huge blessing to be a part of this conference, despite the price of being part of a Lysosomal family.

Blessed to share with you

Lorraine MacKinnon

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