Zoie and I celebrated Rare Disease Day by visiting with our wonderful friend, and God mom, Miss Angie Carman.
Yes, this is Zoie sitting...she is getting pretty good!
I found out about Rare Disease Day last year from a friend, did some research, and decided it was something definitely worth celebrating. I think our family looks at it as a blessing. We were given sweet Zoie for a reason, and we do the very best we can by learning, having support, and most of all loving her with a huge heart! I love this day because it gives me a reason to celebrate how rare Zoie is.
Here are some statistics we are finally sharing with the world after almost two years. Zoie is one in 70,000 people worldwide with Cystic Fibrosis. She is one in 7 people (know cases) worldwide with the form of Microcephaly she has. She is the only known case worldwide who has the Cystic Fibrosis and the type of Microcephaly she has.....She is very rare. We wouldn't have it any other way though because then it wouldn't be Zoie :)
Yes, even when you have a one in a billion kiddo, who you planned on being completely healthy, but has two rare diseases, you find the beauty in the unexpected.
Here are some priceless pictures of people celebrating Rare Disease Day 2013! Thank you to everyone who supports us and so many other families in the world.
Yes, this is Zoie sitting...she is getting pretty good!
I found out about Rare Disease Day last year from a friend, did some research, and decided it was something definitely worth celebrating. I think our family looks at it as a blessing. We were given sweet Zoie for a reason, and we do the very best we can by learning, having support, and most of all loving her with a huge heart! I love this day because it gives me a reason to celebrate how rare Zoie is.
Here are some statistics we are finally sharing with the world after almost two years. Zoie is one in 70,000 people worldwide with Cystic Fibrosis. She is one in 7 people (know cases) worldwide with the form of Microcephaly she has. She is the only known case worldwide who has the Cystic Fibrosis and the type of Microcephaly she has.....She is very rare. We wouldn't have it any other way though because then it wouldn't be Zoie :)
Yes, even when you have a one in a billion kiddo, who you planned on being completely healthy, but has two rare diseases, you find the beauty in the unexpected.
Here are some priceless pictures of people celebrating Rare Disease Day 2013! Thank you to everyone who supports us and so many other families in the world.
Derik's mom and brother's work
My brother and favorite nephew <3
Our couin Kate, she has the biggest heart!
Charleigh, one of Zoie's friends
Emma and Elli, Angie's kiddos
Zoie's boyfriend Lane, yes we have an arranged marriage ;)
Ava, anther sweet girl with Cystic Fibrosis.
And our dear friend Scarlett <3 she was playing peek a boo with the camera.
Here's to kiddos who are rare, but one in a million!
Comments
Post a Comment