A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Saturday, February 28, 2015

Rare Disease Day

Today Is Rare Disease Day.  It is always the last day in February, the rarest month of the year.

This is my angel, my inspiration for this blog.  Please take a few minutes today to think of all those who have a rare disease.  Combined, those with rare diseases out number the number with AIDS and Cancer COMBINED!

I am wearing that I care a little differently this year.  My headband is from my friend Tia, who has a great shop at Hart of Karen.  My nails are 2 custom designed Jamberry nail wraps.  The deep purple was designed by Kacey Lynne Tuls for Quinn Madeline Inc, in memory of a sweet little girl.  The other nail wrap is the periwinkle one I designed for all Niemann Pick Disease families.

So what did you do for Rare Disease Day?


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