“CrossFit is full of stories about people whose lives were changed through fitness, health and community. Every one of us has a story about how CrossFit and those that are a part of it have impacted us and our families. What if you had never gotten the chance to do Fran? What if you had never even gotten the chance to walk? What if the simple act of breathing would one day be the hardest thing you ever did? And what if that all happened before you were two years old? This is the reality in way too many babies and children across the world. Spinal Muscular Atrophy (SMA) is the number 1 genetic killer of children under two, and yet most who read this will have never even heard of it. Children born with SMA will fight every day to control their own bodies and will eventually lose the ability to move, eat or breathe.
My son, Benjamin, was born on June 12, 2005 and left this world on December 29, 2005. He lived for just 200 days. He was an amazing person and an example to us all. He woke every day with a smile on his face and the courage to make the most out of what life had given him. Everyone who was around him was blown away by his inner strength and ability to light up any room he was in. Even as the days became more difficult, he never complained, never cried and never quit smiling. I can remember what an amazing feat it was the first and only time that he was able to reach out and touch something that was in front of him. He loved to watch Aladdin and he loved his Momma. Bug lived a simple life, but he was happy and he never let SMA get the best of him He was and is our amazing son, our little “Bugaboo.”
My daughter, Addisyn, was born on February 23, 2007 and she left us on April 18, 2008. She too had SMA, but she was quite different. She was a rock star and a fighter to the end. She loved life and all that it had to offer. At first, we thought she was SMA free because she moved so much and was so full of energy. The truth is, SMA had her, but she would not go without a fight. Addi fought every step of the way, she moved her arms, she ate real food, and she kept her spirit up until the very end. She loved her books and she too loved her Mom more than anything in the world, but most of all she loved being alive. We miss her so much every day.
I do not seek pity, and neither would they. I am writing this because the first step to fighting this disease is to get the word out that there is a killer out there that most don’t even know about. So when you are standing in a pool of sweat and someone asks you what you are doing, tell them. Tell them about my little Bug, tell them about Addi, tell them about SMA and tell them to spread the word. 3-2-1…Go!”
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