Monday, February 29, 2016


I love someone rare! The last rare disease day that actually fell on the 29th was the first one we celebrated as a rare family. (we were still unsure of what was happening to lila that first february) I didn't realize it at the time that it was the only one we would get with our special girl. I wish so badly our angel was with us today fighting for awareness. One in ten americans have a rare disease and 95 percent of rare diseases have no treatments or medications that can help. I will never be able to accurately describe the hell that is watching your child deteriorate from a disease and there is nothing you can do. Let us all push for more legislation and funds to help these amazing families. 

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