Life as a Leach

Happy Rare Disease Day!  We're all wearing our specially-made Rare Disease Day shirts and would love to see you in your blue as well!  Email me at juliebleach@yahoo.com or tag me on FB with your pictures and I'll do a Rare Disease Day recap! Yesterday, Caleb got on the morning broadcast at his school and shared about Rare Disease Day and why it is important to our family.  He encouraged everybody to wear blue, so we're excited to see how many of his friends are "blue" tomorrow!  The broadcast sparked a conversation in his class about what rare diseases are, what kind of disease Abby has, and how to talk to kids with special needs.  Caleb's teacher shared with me how cool it was to see a first grader sharing and teaching his classmates about diversity in a way that adults never could. I was bursting with pride for my boy!  He truly does have a unique perspective as "the brother," and I'm glad he views it as a great opportunity to share with ot...

Rare Disease Day is THIS Friday, February 28th!  I can count Abby as double-rare, now that she's also a VEPTR kid! I would absolutely love it if you would honor Abby by wearing blue on Friday.   We got tshirts made this year that are super cute, but I'm going to save them for the grand unveiling on Friday.  :) If you wear blue, take a picture, either post it on Facebook or email it to me, and I will spread the Rare Love on my blog!  Thanks for supporting Abby and all of the other Rare kids!

In August, an article that I wrote about Abby for The Global Genes Project was published.  Until I introduced Global Genes to Cerebrocostomandibular Syndrome, it wasn't even listed in the rare disease data base.  The editor emailed me recently asking me to write an update about Abby, so I happily obliged!  I love sharing the miracles!   Look at all the fun stuff I got in the mail the other day as a thank you gift! Hats, bracelets, car magnets, stickers, pins, key chains, and even a bear for Abby!  Everything spreads the message that We Care About Rare!   I'll be sporting my new key chain and bracelet, and I am thrilled with the new car magnet to replace to sticker I had to say goodbye to after my accident.  We're going to put away some of the other stuff to hand out for Rare Disease Day on February 28th.  We have plenty of stickers, so I'm thinking about maybe passing them out to Abby's class or something.  I may even do a little ...