Andrew Glenn Butler was diagnosed with Spinal Muscular Atrophy, Type I, in March 2009. His battle with SMA ended on June 4, 2009, when he was just 20 weeks old. However, his family’s fight for a cure for this insidious disease continues. Together, we are committed to sharing Andy’s story, spreading the word about SMA and providing support to other families affected by it.
Be a part of Andy’s Army and tell someone you know about SMA today:
- SMA is the #1 genetic killer of children under the age of two, yet most people have never heard of it.
- The first treatment for SMA, Spinraza, was approved by the U.S. Federal Drug Administration on December 23, 2016. Research is continuing to search for a cure.
- SMA is estimated to occur in nearly one out of every 6,000 births – that means that two children are diagnosed with SMA in the U.S. each day.
- The gene mutation that causes SMA is unknowingly carried by approximately eight million Americans – one person in every 40 – making it the second most common autosomal recessive genetic disorder behind Cystic Fibrosis.
- SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender – currently, 50,000 people in the United States, Europe and Japan are living with SMA.
- Some statistics show SMA to be TWICE as common as ALS/Lou Gehrigs.
- SMA children with the most severe form often face quickly increasing muscle weakness, leading to paralysis and, ultimately, death.
- The American College of Medical Genetics recommends that SMA carrier testing be made available to ALL couples planning a family, regardless of ethnicity or family history.
- Carrier testing is done through a simple blood or saliva test, and it is readily available. Please ask your doctor for testing if you plan to have a child.
It was a sleepless night in the pediatric intensive care unit of the hospital, but your daddy and I didn’t realize it would be your last. We knew that you had taken a turn for the worse, but didn’t understand … Continue reading
Dear Andy, Today is your 8th birthday, and we’re having a party – in part to mark the first anniversary of my business and also as an excuse to invite our friends and family over. It’s a reason to get … Continue reading
Dear Andy, It’s storming outside as I sit here, trying to find the words for my annual letter to you. Torrential rain lashes against the windows. The sky is foreboding and gray, punctuated with angry flashes of lightening. Thunder booms … Continue reading
Dear Andy, Today is your seventh birthday – a celebration of the day that you were welcomed into the world and the start of our family. Our house should be filled with your little friends, birthday presents, and balloons. You … Continue reading
You get the diagnosis. Your child has spinal muscular atrophy. Until that moment, those words – and the letters SMA – were meaningless to you. Now they are your greatest enemy. You prepare yourself to fight. You dig in, past … Continue reading
On July 25th, we lost a friend. Gwendolyn Strong was – and always will be – such a huge inspiration to us. Her family was always there for ours, standing beside us in our despair and celebrating our triumphs. When … Continue reading
Dear Andy, Today is Thursday, June 4. It’s the first “official” day of summer vacation for your little sister and brother. The sun is shining, and the day looks like it will be a hot one. Daddy and I are … Continue reading
Dear Andy, Your little brother Will recently started pointing to your picture on our family room wall and saying, “Baa-bee?” I tell him that the baby in question is you, his big brother. Not understanding, he points to his own … Continue reading
From our family to yours, we wish you a holiday season filled with happiness and hope…and maybe a little snow. Love, The Butler Family – Alan, Audra, Lucy, Will & Our Angel Andy
“At any given moment, you have the power to say ‘This is NOT how the story is going to end.’” Dear Andy, I’ve been writing – and rewriting – this letter to you for weeks, as I counted down to … Continue reading
May God give you…For every storm a rainbow, for every tear a smile, for every care a promise and a blessing in each trial. For every problem life sends, a faithful friend to share, for every sigh a sweet song, … Continue reading
Dear Andy, Today is your fifth birthday. It’s a Wednesday, which means your father is at work and your little sister Lucy is at pre-school. Your baby brother Will is playing at my feet. I’m sitting in the rocking chair … Continue reading
We are thrilled to announce that we received a Legacy Honoree Award, on behalf of Andy’s Army, at the January 6, 2014, Live Your Legacy Summit! Here we are accepting this prestigious award with Summit host and organizer, Aurea McGarry. … Continue reading
Wednesday, January 8, would have been Andy’s fifth birthday. It’s hard for me to comprehend that it’s been five years since he entered this world – and left it so abruptly. After all of these years, the pain of his … Continue reading
Wishing you a Merry Christmas and a Happy New Year…from our family to yours. With love, Alan, Audra, Lucy, Will and Our Angel Andy
Today is the Annual SMA Candle Lighting, which traditionally takes place on the second Saturday in August. Across the globe, people light candles to remember those lost to SMA and to honor those still fighting. At sunset, our family – … Continue reading
There are so many things that I should be doing right now – the laundry, dusting, vacuuming, and dishes among them – but Will is sleeping, Lucy is at school, and this rare moment of solitude is mine. The house, … Continue reading
A few weeks ago, I was sitting in a rocking chair with my infant son Will on my shoulder and my three year old daughter Lucy on my lap. We were “snuggling up,” in Lucy’s words. I looked down at … Continue reading
I write a lot on this website about our journey through grief after Andy’s passing. By sharing stories of Andy and of our struggles, I hope to help others going through similar circumstances feel a little less alone. I know … Continue reading
Andy was seven weeks old when we stopped denying that something was terribly wrong with him. When we stopped explaining away the belly breathing and why he seemed so floppy. When we rushed him to the pediatrician and our worst … Continue reading