Friday, February 28, 2014

Rare Disease Day

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 others, rather than something of which to be ashamed.

Rare Disease Day has always been important to us, but it's doubly-so now that Abby is doubly-rare!  While Thoracic Insufficiency Syndrome isn't quite as rare as Cerebrocostomandibular Syndrome, the chances of sitting next to someone at the movie theatre with it is pretty slim.  The VEPTR is FDA approved as a humanitarian device that benefits patients by treating less than 4,000 people per year.  At this point, the VEPTR has been used on "hundreds" of patients.  

Soooo...Happy Rare Disease Days, and share those pictures!

1 comment:

Raelyn said...

Julie....
"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 others, rather than something of which to be ashamed.". Wow. What a good boy you are raising, Friend!! ;)
--Raelyn