We were blessed to be able to attend a seminar this past weekend for families affected by 4H Leukodystrophy. So little is known at this point and being able to connect with other families was so important. What an emotional roller coaster! How wonderful to talk to other moms who feel the same things I feel. How downright awful to hear about the future for my little girl. We don't know when but one day her myelin will decrease and she will lose the ability to function. It downright stinks. There is no treatment or cure in the near future. There are only 150 people world wide with 4H! You can imagine that we don't get much funding for research. So the best thing I can do right now (besides pray a whole lot!) is to try to spread awareness. The more people we can tell about Leukodystrophy the better. When the NIH sees that people care about it, they tend to invest more into research. So - please, like the awareness page (https://www.facebook.com/groups/POLR3/). Learn a little about it. Tell someone here and there about this awful thing. And above all - please pray. Pray for Emma to be one of the lucky ones. Pray for her to have a happy and long life. Pray for us to have wisdom to understand her needs. Pray for the Lord to come quickly!
