Saturday, February 28, 2015

Rare Disease Day 2015

Merriam-Webster defines rare as a :  marked by unusual quality, merit, or appeal :  distinctive

b :  superlative or extreme of its kind. 

Dictionary.com defines it as "usually excellent; admirable; fine."

Discovery.com states that it takes millions of years for crystals to form in nature and only a fraction of those will ever be found, mined, and cut into gemstones. 

The rarest gems tend to be valued the highest.  We can search nature, and may never find one of these rare, precious stones.  In fact, wealth used to be measured by the amount of these precious gems that one possessed.  

The first time I held my precious baby in my arms.
She was 5 days old. 1/20/03 
When I began the journey of motherhood, you could compare it to a fisherman.  Here I was, dragging my net, and when I finally opened an oyster, it held inside that rare, precious pearl. 

My rare gem came in the form of my Ashlynne.  Twelve years ago when she was born with a rare disease called Ichthyosis en Confetti, I didn't realize the wealth she would bring to my life.  I thought of all of the things that she might not be able to do, rather than all of the things that she could do, and all of the greatness and awe she would bring into my life.

Fewer than 20 people are documented to have this particular type of Ichthyosis.  Ichthyosis is rare enough, and Ichthyosis en Confetti has been considered one to be extremely rare.  Many people tend to be leery of things that are rare.  "Fear of the unknown" is a common phrase most people are familiar with.  But through life experiences that I have learned from being Ashlynne's mommy, I have come to embrace rare. 

Today is Rare Disease Day.  And today, I am celebrating rare.  Rare is beautiful.  Rare is anything but typical.  Ashlynne is rare, but that's not what makes her extraordinary.  She is special because she is Ashlynne!

Alone we are rare.  Together we are strong!

Celebrate rare with us! Celebrate You!!!


1 comment:

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