Welcome!
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.
- SMA is estimated to occur in nearly one out of every 6,000 births – approximately two children are diagnosed with SMA in the U.S. each day.
- The gene mutation that causes SMA is unknowingly carried by nearly 10 million Americans – one person in every forty – making it the second most common autosomal recessive genetic disorder behind Cystic Fibrosis.
- SMA children with the most severe form often face quickly increasing muscle weakness, leading to paralysis and, ultimately, death.
- SMA is a pan-ethnic disease and does not discriminate based on race, ethnicity, or gender.
- Some statistics show SMA to be TWICE as common as ALS/Lou Gehrigs.
- There is currently no treatment and no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) selected SMA as the disease closest to treatment of more than 600 neurological disorders.
- 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 test, and it is readily available. Please ask your doctor for testing if you plan to have a child.
Dear Andy, Today is your third birthday. It feels like just yesterday you were born, and, at the same time, it seems like that happy day took place several lifetimes ago. I will never forget the trembling excitement I felt … Continue reading →
For those of you who are missing your loved ones at Christmastime. And, for our Andy, who is surely one of heaven’s sweetest angels. Christmas In Heaven Sung by Sarah Schieber 2008 words and music by Jeremy Johnson and Paul … Continue reading →
Happiness can be found, even in the darkest of times, if one only remembers to turn on the light. ~ Albus Dumbledore My husband and I received the news that we were having a healthy baby girl in January 2010 … Continue reading →
It’s never too late to be who you might have been. ~ George Eliot The other night, my husband and I were talking after we’d put our daughter Lucy to bed. He said something funny, and I laughed. He cocked … Continue reading →
Sometimes, in the very early hours of the morning when everyone is still asleep, I think I hear our bedroom door creak open slightly, followed by soft footsteps on the floor. I wonder if you are coming to crawl into … Continue reading →
August is recognized internationally as Spinal Muscular Atrophy Awareness month. It’s a time when families affected by SMA come together as a unified front, regardless of the specific organizations we support or the philosophies we hold, to raise public awareness … Continue reading →
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The month of August has been designated as “SMA Awareness Month.” Several activities are planned throughout Tampa Bay, Florida, (and throughout the nation) to promote SMA awareness, to honor our angels and warriors, and to raise funds for a cure. … Continue reading →
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One day when Andy was still with us, my husband’s aunt called to check in. I answered the phone. She asked me how the baby was doing, and I enthusiastically said, “He’s great!” And, to me, he was. He wasn’t … Continue reading →
On Saturday, November 19, 2011, “Andy’s Army” will walk together at the FSMA Greater Florida Chapter’s Third Annual Walk-n-Roll in memory of Andy Butler and in support of a cure for Spinal Muscular Atrophy (SMA). The event will take place … Continue reading →
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Dear Lucy, Today, you celebrate your first birthday. Right now, you are toddling around the floor in front of me, playing with your toys. Your brown hair is escaping from its entrapment in pigtails, little wisps of curl tickling your … Continue reading →
Dear Andy, Today marks the second anniversary of the day you became an angel – June 4, 2009. I can’t believe that two years have passed since your daddy and I last held you and kissed you. 24 months. 104 … Continue reading →
On May 17, 2011, Oprah Winfrey featured author James Frey on her show. During the interview – which mostly dealt with reconciling the controversy over his book “A Million Little Pieces” – Oprah mentioned that his family suffered a loss … Continue reading →
My husband and I conceived our second child just four months after we lost our first child to spinal muscular atrophy. The decision to try to have a baby so soon after our son Andy’s passing was a difficult one. However, we hated being … Continue reading →
I celebrated my first Mother’s Day as an expectant mom on May 11, 2008. My husband Alan and I were in Ireland for a friend’s wedding, and I was six weeks pregnant. We were so excited about our baby-to-be. My … Continue reading →
For me, Mother’s Day is very bittersweet. As much as I look forward to celebrating my first Mother’s Day with my daughter, my heart aches that I won’t be able to hug and kiss both of my children on that … Continue reading →
I’ve written several posts on this website about the grieving process, which began with our son Andy’s SMA diagnosis. But, I don’t want you to think that our life was devoid of joy during those weeks between the day we … Continue reading →
Tomorrow is Easter Sunday. I’m not very religious, but this holiday holds a special meaning for me. Easter was one of the few holidays that my son Andy had the chance to celebrate. Andy was just three months old in … Continue reading →
A year ago today, my friend Laurie J. called me to tell me that her daughter Abby lost her battle with SMA. Having been through the same horror the previous June, my heart broke for her and her husband. I … Continue reading →
I am an emotional eater. So, it’s no surprise that I gained a lot of weight as we dealt with our son Andy’s diagnosis with SMA and his passing in 2009. Then, I gained even more when I got pregnant … Continue reading →
Recently, a friend of mine from high school, Deb Shoman Young, contacted me about a fundraising idea. After having two beautiful, healthy baby girls, she is ready to get back in shape…and she’d like to get sponsors for her weight … Continue reading →
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