Our Fight against Gaucher's Disease type 2 or 3
There are certain people that come into your life who have words so powerful that you can’t get them out of your mind. They don’t mean to be so prophetic, but with no intention on their part, a single phrase becomes ingrained in your heart. I was talking to another nGD mom a week or […]
[Continue reading...]I can’t believe that it has been 8 months since we last visited the NIH! Time definitely flies by. I’m not expecting any real surprises, but honestly, that is what I am anxious about. Hannah is known to surprise us and throw things into the mix, so I don’t want any surprises. I know that […]
[Continue reading...]We finally got our Cobra information last Friday in the mail. Our insurance lapsed on March 1st since my husband was let go from his job. As soon as we got the info, we read it, found out how much our payment was going to be, and wrote a check to cover 4 months worth […]
[Continue reading...]Hannah has really started improving on her crawling. Until about 4 or 5 weeks ago, the longest distance she would crawl would be around 10 feet. She really never would initiate crawling to go any distance (like to the other side of the room), she always stayed put in about a 10-foot area. In her […]
[Continue reading...]World Rare Disease Day 2010 will be held on February 28. Please join the Global Genes Project to help raise awareness for Rare Diseases of all types by wearing denim on Feb. 28 or holding an event in your local area to raise money for your favorite Rare Disease charity. According to the National Institutes […]
[Continue reading...]We have SO much going on around here lately, it is just crazy! Our next National Institute of Health visit is already set and ready to go! We are going to be going during the kids’ Spring Break so they can go share this experience with us. I know they are going to have a […]
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