Today as I was getting ready for the day I decided that the name for the fundraiser would be Georgia's Journey of Hope. I really loved all of the suggestions and have spent quite a bit of time pondering all of the possibilities. I had wanted to include the word Cure and SMA but I happen to be an optimistic person. I know that last sentence doesn't make sense but keep reading. : )
Georgia came into our lives and graced us with her presence for a short time. She taught Mike and I more about living in 6 months than all of the years leading up to her birth. We were forced to learn about the devastating disease called SMA but we also learned about a lot of other childhood diseases and have met many people fighting every day for their children. This year the fundraiser will be for Families of Spinal Muscular Atrophy and it will continue to be every year until there is a cure. Now, because I am an optimistic person I believe that in 5-10 years SMA will be cured but my journey as Georgia's mother will be far from over.
Georgia's Journey of Hope will then become a fundraiser for Pediatric Palliative Care here in the city of Winnipeg. I am hoping by then that there will be a Children's Hospice and all of the money can be directed to it. I know that I am getting ahead of myself so I will stop there. Just know that I have thought alot about this.
This afternoon as I started to ask myself if I was sure about the name I came to the blog and read about a little boy here in Winnipeg who earned his wings on Wednesday. Noah wasn't yet 4 and had a condition called 12q deletion. You can read his story at noahgrantjohn.blogspot.com Reading Noah's story has cemented the name in my mind.
Before signing off tonight I want to say thank you to Bill and Victoria Strong. They have come up with a video to get people to sign the SMA petition. The video is beautiful and powerful, pretty much like everything the Strongs do. If you watch carefully you'll see our little angel. Thanks so much for including her guys. I encourage everyone to take a few minutes and watch. It will remind you why so many of us continue to hope and to fight. http://www.youtube.com/watch?v=DncMkpqn_xo When you have wiped away your tears if you haven't already signed the petition then hopefully you will. We ask that you post the video on your blogs, facebook pages etc or just forward it through email.
Love to you all,
8 Years an Angel
1 month ago