On January 8, 2009, we welcomed our firstborn son, Andrew Glenn Butler, into the world. A beautiful baby boy that we called “Andy” with thick brown hair and bright blue eyes, he was the best thing that ever happened to us. After 10 years of marriage, our family finally was complete.
At the time of his birth, we thought that Andy was a healthy, thriving baby boy. He kicked, punched and cried like any other newborn for the first month of his life. However, when he was just weeks old, we noticed that his movements were getting weaker, instead of stronger.
Suspecting that something was wrong, we took him to our pediatrician on March 3, 2009, who immediately admitted Andy to the ICU of University Community Hospital in Tampa. Initially, he was diagnosed as having hypotonia, which is the lack of muscle tone and movement in his limbs, as well as having fluid in his lungs. Andy underwent a battery of invasive, diagnostic tests to determine the cause of these symptoms.
The doctors said that their working diagnosis was Spinal Muscular Atrophy (SMA). They believed that Andy had the most severe form of the disease, Type 1, also called Werdnig-Hoffmann Disease. We immediately searched the Internet for this disease and found that SMA was the number one genetic killer of children under the age of two. It was every parent’s worst nightmare.
SMA is a neuromuscular disease characterized by gradual muscle weakness due to loss of motor neurons of the brainstem and spinal cord. As the disease progresses, the affected child’s muscles lose tone, movement is limited and breathing is impaired. With no treatment or cure for SMA, the child’s lungs will give way or pneumonia will set in, resulting in death.
Because SMA is an autosomal recessive disease, it means that both parents must be a carrier of the gene responsible for the disease, and these mutated genes must be passed onto their child. We had no idea, like the approximately nine million other Americans who unknowingly carry this gene, that we had a one in four chance of having an SMA-affected child or that with one simple blood test we could have known about it.
We turned off the computer in shock. We cried as we counted all of the symptoms of this insidious disease that Andy already was showing – lack of movement, floppy arms and legs, no neck strength, feeding issues. How was this happening to us? How could we suddenly go from having a thriving baby to one on the brink of death? How had we never heard of this disease?
On March 17, 2009, our worst case scenario became our reality when our son’s diagnosis of SMA Type 1 was confirmed. Andy was just nine weeks old. His doctors told us that we would be lucky if he lived for another six months. They didn’t think he would see his first birthday.
Although we were heartbroken, we pushed our feelings of loss aside and committed ourselves to celebrating each day of his life. We showered him with love and affection. We danced with him and sang to him every day. We adapted toys so he could play with them, no matter how weak he would get. And, we had birthday parties for him every month, because each month we feared he wouldn’t be there for the next.
In the weeks following his diagnosis, we had countless doctor’s visits and therapy sessions. Andy was put on several medications to help reduce his reflux and to promote his muscle strength. But, with no real treatment protocol available, the disease still caused his muscles to weaken a little more each day, eventually impacting his ability to suck, swallow and breathe. He could not hold his head up or sit unassisted. He could not move his hips, legs or shoulders. His symptoms were progressing very quickly, no matter what we did to try to slow them.
But, through it all, Andy still laughed and smiled. He was a cognitively advanced baby with an attentive look in his eyes and an unbelievably long attention span. No matter how weak he was, he still cooed along with music and enjoyed watching Baby Einstein videos. A cuddler, he loved to be held and rocked. He even learned to give kisses. That he was such a happy baby kept us going as we continued our fight against his SMA.
Between March and June 2009, Andy was hospitalized four more times at All Children’s Hospital in St. Petersburg for respiratory and gastro-intestinal issues, including one surgery and another stay in the ICU. And, it was in the hospital on June 4, 2009, that Andy lost his battle with this insidious disease. He was just 20 weeks old.
Andy was physically weak, but he was strong in spirit. He was the bravest person our family has have ever known. He taught us to smile in the face of grief and proved the power of laughter. He made us realize how important it is not to take time or family for granted. He renewed our faith, because we have to believe that there is a greater plan for our family.
And, with his passing, Andy gave us a mission. We will do everything we can to prevent another family from going through this horror. With the support of our friends and family, we are committed to sharing Andy’s story and spreading awareness about this terrible disease. We created “Andy’s Army” to share information about SMA and how people can help stop it. Although there is currently cure for this disease, researchers have isolated the gene that causes it and, with proper funding, a cure can be found.
We hope that you’ll join “Andy’s Army” and help us continue our son’s fight. Share this website with your family and friends. Like the Andy’s Army Facebook page. Now is the time to spread the word about SMA – in memory of Andy and to save other babies like him.
Alan and Audra Butler