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.

Wednesday, January 20, 2010

Holding 'Strong'

Well, it's been a bit of a roller coaster ride but the Gwendolyn Strong Foundation has pulled back into sixth place. This means that the charity remains in a position to win one hundred thousand. This is in large part due to so many committed individuals refusing to take 'no' for an answer. Many of them are parents or family members of those affected by SMA but others are friends, acquaintances and even strangers. Of course, the charge is being led by Bill and Victoria Strong who along with Gwendolyn inspire so many of us every day.

Mike and I had a good laugh last night as he decided to email everyone in his address book requesting that they vote. Our address books are designed to pick up anybody that we have ever corresponded with so this meant that he emailed all kinds of people including people we haven't heard from in years. This also means that bank managers and city employees will have received our requests. Our thoughts were that even if they took the time to ask, "What the heck is SMA?" then it would be worth it.

SMA remains a disease that most people have never heard about despite the fact that it is the number 1 genetic killer of children under 2. Why? Well sadly this is partly due to the fact that the victims die before they ever make it out into the community. Autism, Cystic Fibrosis, Cerebral Palsy, Cancer are all diseases that we know because we encounter them everywhere. The individuals that are afflicted with these conditions are often old enough to be in school, work, have friends etc. Georgia was 6 months old!

Another reason is that many of us are still told to take our children home, to love them but there is nothing that can be done. We could have taken our Georgie home, loved her, buried her and tried to move on but the last part just seems so wrong. Georgia has taught us and I know so many of you that there are many ways to help make the world better. We refuse to let her be forgotten, and we refuse to give up on the idea of helping others with the same condition.

Having said all of that can I just say that we here in the Lucas household are totally humbled by the support that we have received. My Facebook page is filled with all of your requests asking people to vote for GSF. I have had a chance to reconnect with people that I haven't talked to in years and they too have taken up the cause. Some of you have even joined Facebook just to vote. To you we can only say thank you.

The only way that we can hold on to this position is if we keep going. I know that some of you are probably annoyed but think about it this way. Autism has Jim Carey and Jenny McCarthy. They have books, millions of dollars of research, treatment and 'cures'. Their victims are out in the community getting noticed. Our children remain silent for the most part. We have no celebrities and no treatments. All that we are left with is manpower and hope.

So, we continue to ask that for two more days... come on it's only two more days... you continue to post and forward our message of hope. Tell people about SMA, ask them to vote. For the most part, when people actually learn about SMA they want to help. The key is getting them to know what SMA is.

Love to you all,

Kristen

1 comment:

  1. Autism has Jim Carey and Jenny McCarthy. They have books, millions of dollars of research, treatment and 'cures'. Their victims are out in the community getting noticed. Our children remain silent for the most part.

    This is said so much better than I could ever have said it. Which is exactly why I DID NOT vote for autism awareness, even though my 22-yo son has Asperger's. I did not want to jeopardize the Gwendolyn Strong Foundation.

    I am saddened to read about your sweet Georgia.

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