Welcome to Georgia's Journey

Georgia Lily Lucas was born at home on October 6th, 2008 4:15am, in Winnipeg, Manitoba. She was diagnosed with SMA (Spinal Muscular Atrophy) on April 1, 2009.

On April 3rd Georgia was taken home, to be near her sisters and the rest of her family and friends. Nearly three weeks later, on April 21, 2009, she died peacefully -- in the loving arms of her mother and in the same room in which she was born.

Monday, August 25, 2014

Momentum

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,

Kristen

2 comments:

  1. I have been amazed at not only the monetary impact the ice bucket challenge has had but the knowledge people are gaining about ALS and therefore SMA-it is incredible!! I am glad all these things bring hope to families who have lost loved ones to these diseases and to those with loved ones still fighting-hoping is HUGE!
    Love to you all, Em

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  2. I had not put 2 and 2 together on the connection until I saw you post about it. Hopeful and hope filled!

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