Monday, January 19, 2015


This weekend was a quiet one for us.  Partly because we are trying to keep Isaiah healthy for his MRI and partly because we were struggling with our emotions.  If you follow Isaiah's facebook page, you may have seen that I shared a video about a baby girl named Everly that was born with OI a few weeks ago...

Her OI was severe.  It was lethal.  Everly's lungs were extremely underdeveloped and the ventilator that kept her breathing was also doing harm to her lungs.

Yesterday, she earned her wings.  

We have cried for Everly.  We've cried for her parents We've cried for her family.... We've also cried for ourselves.  We relate so much to their journey...

In her short time, Everly moved mountains.  Through her father's words and videos, she brought (and continues to bring) awareness to OI.  His videos have been shared and viewed thousands and thousands of times.  She's brought communities closer.  Together as a family they've showed what true faith and devotion to God looks like.

Please take a moment and pray for Everly and her amazing parents.  If you are on Facebook, consider changing your profile picture to a snowflake (please feel free to use the picture above).  In the OI community, when we lose a young one with OI, many of us change our profile pictures to snowflakes in honor of that OIer and their family.  Some of us say that it is "snowing on Facebook" for them...the snowflake represents their uniqueness, their fragility.

Everly baby, fly free beautiful girl.  

Everly Leyden Baker
12/28/2014  -  01/18/2015

1 comment:

  1. Prayers are sent for the family. I could not get them off my mind yesterday. We know she is at peace now. God be with them as they grieve for their sweet baby girl Everly <3