I have neglected to blog about a very special gift that arrived in my mailbox during the mad holiday rush. Several years ago I became aware of the Global Genes project. Peyton may be one of only 100 or so diagnosed cases of Nager Syndrome, but rare diseases impact millions. As the Global Genes website says:
Rare Disease affects over 350 million people worldwide, and the largest percentage are children. There are over 7,000 rare diseases that have been identified all with very unique needs, but many with little to no support. Although each individual disease may only impact a few, together the impact is in the millions. Rare disease is not so rare.
As part of the Global Genes Project, they started the 7000 Bracelets For Hope. To help show support and bring awareness to families of children with rare disease, Global Genes solicited 7000 jewelry designers to create a blue bracelet. I had signed up so long ago I had forgotten all about it and then right before Christmas I received my blue bracelet. It is beautiful and the note that came along with it brought tears to my eyes:
"When your life is about caring for a chronically ill child, I suspect you seldom get to think about pretty things for yourself. This bracelet is for you! May it bring a smile to your face to know that others care!"
Eileen Bednarz was the jewelry designer and she is Vice President and Creative Director of Second Chance Websites LLC. Thank you Eileen for the time and sentiment that went into making this bracelet. I will keep this bracelet safe until Peyton is old enough that I can explain the story behind it and how it is an example of how there are certainly wonderful people in the world.
February 29th is Rare Disease Day 2012. Please help bring awareness to rare diseases like Nager Syndrome by wearing jeans or a denim ribbon.