Saturday, March 1, 2014

Rare Disease Day Recap

Matt and I were amazed and humbled at the number of people who took the time to support our family by sending in their "blue" pictures.  There were many others who wrote Facebook posts to show support as well.  As I said in my Facebook post yesterday, the thing I love about Rare Disease Day is that for once, you're not alone. When YOU are the expert teaching the doctors about your daughter's syndrome all of the time, it can be draining. With only 9 other kids in the world with the same syndrome, there's not lot of opportunity to band together. But on February 28th, all of the families living with a rare disease can join together and show how strong they really are!

Thank you, thank you, thank you for loving on our family in this way!  The kids loved seeing all of the pictures!  Here's the recap:

Family members showed us how much they love Abby...

Does Anna look up to something, or what?!

We had schools wearing their blue...

Abby's teachers showed off their blue...

Ms. Sarah even had a matching "I love you" sign!

Friends from all across the country showed us their love!  Most of these people have never even met Abby, but they have followed her story and wanted to show their support.

The Russell family even made a "rare" braided Challah bread!

Two more rare cuties!

While we have never met the Matlock family in real life, Rachel and I have bonded over trach life and in learning how to God in this journey.  She is a real encouragement to me!

Teacher friends wore blue to support our family!

Lots of church friends showed us the love...

Tori is one of Abby's good friends!

Abby loves her "Big Abby!"

Here are more of our friends showing off their blue!

This was one of Abby's wonderful NICU nurses, wearing her blue for Abs!

We even had some four-legged friends getting in on the action!


The Leach Family <3 p="">

1 comment:

Raelyn said...

Since I was born with three rare birth defects. Craniosynostosis. {One out of every 2,000 live births!!} Congenital diaphragmatic hernia. {One out of every 2,500 live births!! In fact. Approximately 1,600 babies are born each year with CDH!!} And, Wolff-Parkinson-White Syndrome. {One to three in 1,000 people worldwide are affected!!} I would be considered as "rare", too!! Three times over!! Cool!! ;)
I may have not sent you any pictures, but I unintentionally wore my Iron Man t-shirt that is black, but has a blue arc reactor!! Which, I thought was cool!! Why? Because Iron Man is an unlikely superhero, as are so many rare children!! {And adults!!} I also wore blue jeans, as per usual for me!! ;-D
These pictures!! Wow. Just wow!! I am happy that so many people {And canines!!} sent their love!! ;)