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!
http://www.omahamorningblend.com/videos/192483851.html
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.
http://softbones.org/content.php?168
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 (:
Lindsey
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.
ReplyDeleteBeautiful video!
ReplyDeleteI 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.
ReplyDelete