Andy's Army

In memory of our son, Andy Butler, we are joining forces to raise awareness and fight for a cure for spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two.

In memory of our son, Andy Butler, we are joining forces to raise awareness and fight for a cure for spinal muscular atrophy (SMA), the number one genetic killer of children under the age of two.

Our son, Andrew Glenn Butler, was born on January 8, 2009. At the time of his birth, we thought that Andy was a healthy, thriving baby boy. When he was just weeks old, we noticed that his movements were getting weaker, instead of stronger. 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. He underwent a battery of diagnostic tests to determine the cause of these symptoms.

Spinal muscular atrophy (SMA) was first our worst-case scenario as we searched for a diagnosis, and then it was the reality of our daily lives. SMA is a neuromuscular disease that attacks motor neuron cells, leading to the inevitable atrophy of the muscles that those lost nerve cells are meant to instruct. As the disease progresses, the affected child’s muscles lose tone, movement is very limited and breathing is impaired. Ultimately, the lungs give way or a fatal pneumonia sets in.

Research shows that approximately one in 35 people are “silent” carriers of this genetic disease, and one in 6,000 babies are born with it every day. It is considered a “common” rare disease. But no one seems to know about it – certainly, we did not.

Andy’s diagnosis of Type 1 SMA, the most severe form of the disease, was confirmed on March 17, 2009, when he was just nine weeks old. We followed in the wake of Andy's illness, reactively trying to treat his symptoms while he bravely fought for his life. We had countless doctor’s visits and therapy sessions. But, with no real treatment protocol or cure available, the disease caused Andy’s 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.

Between March and June 2009, Andy was hospitalized five times for respiratory and gastro-intestinal issues, including two stays in the ICU. And, it was in the hospital on June 4, 2009, that Andy lost his battle with this insidious disease.

With his passing, Andy gave us a mission. We will do everything we can to prevent another family from going through this horror. With our friends and family, we are committed to sharing Andy’s story and spreading the word about SMA.

We had no idea that we were carriers of this devastating disease. In fact, approximately 9 million Americans carry the gene for SMA and do not know it.

Please visit our Web site to learn more about our son and our cause - www.andysarmy.com. Now is the time to spread the word about SMA - in memory of our son and to save other babies like him.

1. To educate the general public about SMA

2. To encourage people to sign the SMA petition for a cure - http://www.PetitionToCureSMA.com

3. To promote the availability of carrier testing and pre-natal screening for SMA

4. To raise funds in support of a cure

5. DONATE NOW at http://www.fsma.org/GiftReg/dsp_donationPage.cfm?AppealCode=REGOTHE09&idUser=3981