One of the awareness efforts that the Global Genes Project is currently running, is the 7,000 Bracelets for Hope campaign. The number 7,000 represents the 7,000 different rare diseases that impact approximately 30 million Americans, including our little angel Jacob. People from all over the United States donate beautiful handmade blue bracelets, which are then gifted to those affected by a rare disease. The blue color comes from the connection to blue jeans; sort of a play on words with "genes", since most rare diseases are caused by faulty genes. We submitted a request to receive bracelets and just happened to get our bracelets in the mail just in time to wear them at Jacob's Family & Friends fundraiser back in September. The bracelets are such a special and meaningful gift that connects us to a very important cause, while at the same time raising awareness. I wear my bracelet for hope along with my Joy of Jacob wristband and other bracelets that I've been gifted -- a simple way to show support for those afflicted with rare diseases and most importantly, to serve as a visual token of my love for my little angel Jakey.
I should also add that I connected with the designer (donor) of this bracelet via e-mail shortly after Jacob passed, just to thank her and let her know how much her small act of kindness meant to me. In return, I received the most thoughtful e-mail response from her...thanking ME?? She had spent over an hour and a half on Jacob's blog reading about our journey with Niemann-Pick. I later found out that she had made a donation in Jacob's memory to the Niemann-Pick Disease Foundation -- so incredible! The kindness and generosity we have experienced through everything with Jacob has taught us many things...
- Sometimes it's the little things, that mean the most
- No act of kindness (no matter how small), is ever wasted
- Never underestimate the kindness of strangers
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| My beautiful bracelet for HOPE, complete with a little angel and reminder to keep the faith. |
The Global Genes Project promotes that "Unity creates HOPE," so I encourage you to visit their website, 'friend' them on Facebook, and if you're super crafty, perhaps you can even donate a special bracelet or two to those affected by rare diseases.
** Reminder: Don't forget to WEAR THAT YOU CARE this Thursday, February 28th. Rock those jeans and sport your Joy of Jacob wristbands to help raise awareness for Niemann-Pick Disease and other rare diseases. **
Sarah - Thank you for sending the wristband - it nestles on my wrist right next to Trek's. :) Your post about raising awareness is timely and special for me (forgive this long post, but I wanted to share with you). I follow the blog of the mom of two children with San Filippo Syndrome, another lysosomal storage disease. Although her children will live beyond the age NPA babies reach, the outcome is still the same. Stefanie recently posted about an experience she had while discussing some of the challenges of special needs children in a large group setting. She tells how she became very emotional and reactive to some comments that were made and referred to her sharing her experiences and the subsequent emotional display as "flashing her privates" before this group. That reference alone made me laugh out loud because it is such and apt description of what all of you NPD moms do in your blogs. I really want to share my response to her blog with you so you will know the awesome effect your sharing has and to thank you again for allowing me to share your journey:
ReplyDelete"Stefanie - what a fantastic post! Please let me tell you how powerful "flashing your privates" really is. Anyone with an ounce of compassion feels genuine sorrow and concern when they read about a child with a life limiting disease. But when you put a name and a face to that little person - when you share your journey - your most private thoughts - your hopes, your fears, your joys and sorrows, a relationship is created. When you allow us (your blog followers and those who can have face-to-face interaction with you) to travel through life with you, the relationship grows - from bystander to participant. We come to love your children and you as though you are family. We are inspired by your courage, touched by your openness, and in awe of your fierce determination to make the world aware of these thieves of our precious little ones. The love of your children that your sharing creates spurs us to take action rather than just observe. We become advocates for awareness, supporters of research and champions of your precious and perfect babies. We share their stories and the lessons of love they bring to us so that their voices will always be heard. So - thank you Stefanie - and all of the moms and dads who put themselves and their families out there - for 'flashing' us. Our lives are forever changed."
I still visit your blog and I still grieve for you and others - Prayers to you and your family...always.
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