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.
Saturday, February 27, 2016
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.
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.
Friday, February 26, 2016
Thursday, February 25, 2016
Sunday, February 21, 2016
Thursday, February 18, 2016
We were so lucky to get a phone call from our friends the satos telling us that they had last minute tickets to the ice castles in midway. I have been wanting to go all season but they were sold out. They were incredible! Completely breathtaking.
Poor lady slipped in one of the tunnels