Since I havent posted a lot during leukodystrophy awareness month - TopicsExpress

Since I havent posted a lot during leukodystrophy awareness month heres the UGLY of MLD. I dont usually post like this because no one wants to see the bad. Saturday night I thought I was going to lose my baby. There was a team of nurses and I was scared out of my mind. I didnt know what to do. THIS is what needs awareness. NO child should go through this. Theres not enough research being done to prevent this!! If they did the research for newborn screening and mandated it in every state this could be prevented. She was drooling blood because they had to suction her so much. She had a mucus plug in her chest and wasnt able to clear it alone. It caused her to not absorb oxygen correctly and she was not very responsive. We need to work to raise awareness and push companies to do the research. These kids deserve it!!

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