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 (:


  1. I read Evie's story on a flight on Southwest last year. I NEVER read those magazines and I can only say that God wanted me to pick that magazine up and flip through the pages to read your amazing story. I have been checking in on your blog ever since. I am so happy to hear all the miracles that are happening in your life daily. I have been blessed just to read your story.

  2. I have been following your story since I first read about Evie in Spirit magazine. I am a clinical research associate who has specialized in orphan drug trials; Cystic Fibrosis, Metabolic PKU and most recently Hereditary Angioedema (HAE). I won't lie, there are times reading a medical chart that I am crying while working, but reading your story and the personal accounts from patients who have benefited from the drug products I have assisted in bringing to market make this such a rewarding career. God bless to you and your beautiful family.

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