Five years ago, Georgia died less than three weeks after her diagnosis. As a family, we had only just begun to understand anything about Spinal Muscular Atrophy and she was already gone! It was devastating and heart wrenching. While I knew, that I it was too late to save my daughter I could not sit idly by as other families continued to lose their babies.
For the last five years, our family and community has continued to try to raise awareness and funds towards a cure. This has not always been easy. To say that is emotionally exhausting at times is an understatement. The truth of the matter however, is that we really are getting close!
The SMA community has been getting louder and more powerful by the year, thanks mostly, to some very influential and inspiring people in the states. This past May the first infants with SMA type 1 (just like Georgia) are receiving the first ever trials of gene therapy. There is also something new and fun happening, that while isn't directly related to SMA, can only help!
The ALS ice bucket challenge has already raised over $70 million and it's everywhere! People all over the world are learning about this brutal and devastating disease! What many people do not know is that SMA is considered Baby ALS in that it is a strikingly similar disease that it affects much younger individuals. The momentum created by this challenge is opening up a conversation and creating a new understanding.
Make know mistake, momentum is a powerful force! It is a strength that allows something to grow stronger and or faster as it continues! The families that are waiting for cures to ALS and SMA, need this momentum.
It allows parents even like me to feel a new sense of optimism and support. As we approach this year's Georgia's Journey of Hope and what would have been her 6th birthday, I can honestly say that I am feeling... HOPEFUL.
Please continue to support these worthwhile causes. You can do so by choosing to participate in events, volunteering or donating. The momentum is growing faster and we are all moving towards something miraculous that will change lives forever. Won't it feel good to say that you were part of it?
Love to you all,
Happy 6th Birthday Emersyn!
3 days ago