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,
Kristen
Shores of Grief ~ 15 Years
2 weeks ago
Your thought process and insight have come through to pick a perfect name for Georgia's fundraiser. Your optimism is inspiring.
ReplyDeleteWow. the video your friends created is amazing and yet so sad when you see all those beautiful faces and think of all the families whose hearts have been broken. SMA is such a terrible disease that desparately needs a cure. Your efforts to help find that can only help that happen sooner.
Always thinking of you, Mike and the girls.
Take care.
Sue
I think you have chosen the perfect name, for all your reasons and more. Georgia taught us all so much, to hope about the future, the future of SMA (or lack of it taking lives in the future!), and about having joy and hope in all we do so what a perfect name for the fundraiser. Georgia, I have no doubt, helped you to know that you had chosen the right name and she will look down and be so honored in all you do. Your outlook and optimism as always are so inspiring, you can't imagine how much you are teaching people just by being you!
ReplyDeleteI watched the video yesterday and was amazed. So many beautiful faces....so powerful and to see Georgia there, once again helping in the fight, brought even more tears to my eyes. She is still teaching each and every day!!
Thinking of you always, Em
This is so wonderful what you are doing -- to honor Georgia, to fight for other children, to bring peace to so many families. I LOVE your thought process. I totally get it. My life now functions on a journey of hope!!! And...I am hoping it will be LESS than 5 years to a cure...and then -- unfortunately -- there are so many other childhood diseased to tackle.
ReplyDeleteAnd, thank you so much for what you said about us...again. There are 2 photos of Georgia in the video and her name is at the end. Thank you so much for sharing her with me. She has touched my life forever.