evie jayne: February 2018

Wednesday, February 28, 2018

Rare Disease Day 2018

Hi Friends! I can NOT believe how long it has been since I posted here but wanted to share a video in case anyone still checks this page (: Evie is doing so great, and we are so thankful to our Heavenly Father for his provision in her life and His constant presence in our home and hearts!!

Evie: Rare Disease Day Video

Love you friends!

Our Story

Hi New Friends!

This is the story of our Evie Jayne... as it unfolds. When I was 20 weeks pregnant with Evie, our second daughter, we were told that she had a lethal form of Osteogenesis Imperfecta. We finished the last 4 months of our pregnancy praying for a miracle, but also planning for Evie's passing. Evie was born on September 19, 2009, and the few minutes to hours we were supposed to have with her have turned into months.

Evie has a bone disease called Hypophosphatasia. She has been on a clinical trial since she was 2 months old, and it is going beautifully so far. She is truly a miracle, healed by our Heavenly Father, blessing our lives one day at a time.

So here is our blog to share her story, our joys, fears, prayer requests, and day to day life with our precious girls.

If you are new, here is a link to the Beginning of our Story.