Today I am honored to welcome Andy's Mom, Audra. Audra's Son Andy sadly passed away in 2009 at five months old due to spinal muscular atrophy. From his short little life Audra has created a beautiful legacy of love by writing about her struggles with grief from the loss of a child due to a fatal illness as well as by educating others about spinal muscular atrophy and providing them with helpful resources.
This is Andy and Audra's story. I hope you are as INSPIRED by her love for Andy as I am.
Our firstborn son, Andy, was diagnosed with spinal muscular atrophy (SMA), an often-fatal degenerative neuromuscular disease, when he was just nine weeks old. While little known, SMA is the number one genetic killer of children under the age of two years. At the time of his diagnosis, Andy’s doctors told us that we would be lucky if he lived for another six months.
While my husband and I were heartbroken, we pushed our pain aside to learn all we could about SMA and to help Andy fight it. He endured countless visits to specialists, therapy sessions, and medications to combat the progression of the disease. But, with no treatment or cure available, SMA still caused his muscles to weaken a little more each day, eventually impacting his ability to suck, swallow, and breathe. The disease took Andy’s life on June 4, 2009, just four days shy of his five month birthday.
Although our sweet baby boy was physically weak, he was amazingly strong in spirit. Andy’s body was paralyzed, but his eyes danced. He taught us to smile in the face of grief and proved the power of laughter. He showed us how important it was not to take time or family for granted. He was so very brave. And, with his passing, he gave us – and me specifically – a purpose. I left my full-time job to dedicate myself to making a difference in the fight against SMA in his name and to provide a support network for other families facing the disease. I joined the local executive board of a national SMA organization, but soon found that I needed to do more – I was compelled to create a lasting legacy for my son.
Audra Butler is a writer, philanthropist, and, most importantly, a proud mother of three beautiful children – two in her arms and one in heaven. You can follow Audra's story at Andy's Army where you can find resources and education about spinal muscular atrophy and child loss.