Thursday, February 28, 2013

Happy Rare Disease Day!!

Hi Friends!!

February 28th is International Rare Disease Day. To start the day Evie was asked to be on the morning talk show, the Morning Blend here in Omaha.
Here is a link to the broadcast!

There is also a new video about Hypophosphatasia, the disease that Evie has, featuring some photos of her and many of our friends with HPP.
The Soft Bones group has given us access to connections and relationships with other people who have HPP, a forum to ask questions, meet others and not feel so isolated. We are so thankful for them.

We are truly blessed to be celebrating our extra special, ultra-rare girl today. I can't believe how far she has come in the past three and a half years, how faithful God has been every day, and how much we have grown in our appreciation of life, family, and all of you around us.

Love you all (: