We found out a few weeks ago that International Rare Disease Day was Feb 29th this year, so we ordered our shirts and got ready! Here are a few pics from today of us sporting our shirts to help raise awareness of hypophosphatasia (hpp), talk about how it's affected our lives, and the importance of people reaching out so they don't feel isolated.
It was so fun to look at all of the pictures on facebook of people Evie's age and older, to see how she might progress as she grows. We are blessed to have an active community with so much loving support (:Hope you all had a blessed day as well!
Love, the Elsaessers (:
How awesome that Rare Disease Day is on Leap Day! :)
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ReplyDeleteLet me try this again, too many typos in my first attempt.
ReplyDeleteI just wanted to thank you for coming to talk to our MOPS group today. I wanted to come up and thank you in person but I was a complete emotional wreck. Your story reminded me of the loss of my daughter Madelyn and I just wasn't able to come up and say anything. Thank you for sharing and praise God for your precious Evie!
God bless you and your beautiful family!
Jen M.
www.ingodstimenotmine.blogspot.com