Unicorn: Mito Warrior

Well, it has been a while hasn’t it? I believe I need to pay more attention to my planner as I do plan to publish blog-posts of yummy recipes. Seriously, I mean we have to eat sometime! Unfortunately, I have just been busy with my little unicorn, my daughter. She is turning 2 this winter. (Wow- how time flies).

I have always enjoyed food and home cooked meals, at some times I would say a little too much, so finding passion in my Pampered Chef products was not hard. When you add the craziness of being mom of two kids, the tools made my life easier and allowed me to spend less time in the kitchen, therefore giving me time to do what I wanted to do, spend it with my family.
However, in August 2015, my passions kind of changed. My youngest daughter became sick. Very sick. And the doctors could not figure out what was wrong with her. Being at the hospital and seeing my child fall down the rabbit hole of sickness, while not getting any answers is quite disconcerting.

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Unicorn in PICU

 

Finally, an educated guess was made. A course of action was taken. A few DNA tests later, with a few false starts, we finally obtained a diagnosis. Mitochondrial disease.

There are multiple ways a person can be affected by this, so many, that some have not been discovered yet. I am sure you can imagine that a rare disease that can show up in multiple ways needs tons of research. We are still trying to grasp what this means for our family and for our unicorn.
Earlier this month, this article was published and many of my friends brought it to my attention.

It talks of a book written about Kate Drury. Kate was a little mito-warrior that lost her battle and passed away last year. This book is hoping to be an irreplaceable tool to help families deal with their grief, as well as help raise awareness of the disease and funds towards research. My little unicorn is not afflicted with the exact same issues Kate was, but any research towards mito-issues is a good thing.
When this book becomes available, on September 18, 2016, you know we will be grabbing the first copy that we can. This will also be the kick-off of the Global Mitochondrial Disease Awareness Week. During this week, I am asking you to please share everything and anything that you can share about mitochondrial diseases. Share to ensure that all these amazing, smiling, brave, little warrior’s stories are heard. Until then, we will continue living life, one day at a time. Enjoying the smiles and the laughs of our little unicorn.

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Miss Unicorn playing at home, a year later.

 

 

 

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