Utah rare asked if they could honor Lila by having her picture held by another rare child during the national anthem at the Jazz game.
Ruby loved the dancers and the dancing bear
The " lindseys" snelgrove and Armstrong came to support. These Yale roomies of mine are always doing so much to remember my girl
We were a little disappointed that they didn't pan the rare kids a little better and get a good shot of our girl in the jumbo tron. Oh well, we loved seeing her smiling face.
These cute little studs.
It's funny to me the days that hit me with grief. This rare disease day has knocked me to my knees. It's a weird position to be in. I loved being a special needs mom and was humbled to be in their community but now I am neither ( only in spirit ) I wish Lila was with me. I wish that I could still say we are special needs family. And while I will always be one in my heart that is different than the day to day struggles that these families deal with constantly.
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. 
