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Running for Mintie

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I decided to set myself a challenge this year. A challenge I certainly never believed I would be able to accomplish. However, day by day that challenge seems to be getting closer and dare I say it, it is looking like something I might actually achieve. I'm running the Rotterdam Marathon on April 14th for my 4 year old niece Mintie who suffers from a rare disorder, Lamb-Shaffer Syndrome. 

My sister in law Bex, recently posted this which I think says it all: 

 "As the parent of a special someone with a rare disorder, getting that initial diagnosis feels like climbing a mountain... and then you reach the summit. 

You realise that behind your mountain is another enormous mountain range called "so what does this mean?" Navigating a rare disorder mountain range feels like climbing without a map, or bits and pieces of a map, that you put together yourself from random maps you've found along the way. 

Rare Disorders New Zealand can be the Base Camp for this journey - information, fuel, support crew, a thermos with a hot milo." 

There is not much more to add, other than hoping to be able to raise just a little something for Rare Disorders New Zealand so they can continue their amazing work in becoming that 'Base Camp' for all those parents and family members out there, with a special someone with a rare disorder.
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    Stephanie Hunink
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