I am sitting at a benefit concert that my sister organized for her best friend's daughter who is very ill with a rare disease called Hurler's Syndrome, and I must tell all of you who read my blog how proud I am of my sister!!! She has done a fantastic job planning, organizing, and raising money for this sweet little girl Addy Grace. There have been 4 bands, raffles, a silent auction, t-shirt sales, and a bake sale during the concert. I am not sure how much she has raised, but I know every little bit we got tonight will help to fight this rare disease.
The disease is caused from a genetic defect that caused Addy to be missing an enzyme that she needs to process sugar. The sugar attaches itself to the inside of the body causing the bones and muscles to become thick. Eventually it will spread into the lungs and brain. It is so rare that only 1 child out of a million has it.
Right now Addy and her mom Amber are staying at Duke for stem cell and chemo treatments. The costs, as you can imagine, are outrageous. My sister wanted to do something to help, thus the concert tonight!
I know she will forever be my "little" sister, but tonight she has done a BIG thing!!! I already loved and respected her so much because of how great a mom, wife, and sister she is... guess I better add event planner and friend to that list!!!
This just in... We raised $9,000!!!!!!!
Posted from BB's iPhone!