It was 2008 when we learned that our one year old twins had Spinal Muscular Atrophy (SMA). We had never heard of this disease and had no family history of it, but we've learned first hand that this degenerative disease takes its toll, both physically and emotionally. SMA has robbed our children's ability to move freely, to run and play the way kids are supposed to, to cough, and even to chew and swallow. It's robbed us of the certainty of seeing all of our beautiful children grow up. It means multiple hospitalizations for pneumonia, 6 hour spinal rod surgeries and $50,000 electric wheelchairs. Adapting our home with ramps and roll-in showers. Breathing treatments, leg braces, tube feedings and case workers. This isn't the way life should be for nine year olds, and that's why Cure SMA is so important to us.
SMA affects Kyle and Lauren's voluntary muscles. They are missing a gene which controls a certain motor neuron, which means that they've become weaker every day since the day they were born. At 9 years old, they've never sat up on their own, or rolled over or walked. Their reading skills are above grade level, but they cannot turn the page of a book without help. Kyle imagines kicking a soccer ball but can force his foot to move only one inch. Lauren loves to dance, but can only do so by laying in her bed and swaying her knees and using hand motions. But these kids are brilliant, charming, and extroverted. What they lack in physical strength they make up for in emotional strength and inspiring perspectives--their smile and laugh muscles still work!
It's not just about making it through. It's about beating this disease. The MDA and Cure SMA are at the forefront of breakthroughs in SMA research and patient care, things we hope one day strengthen our children's bodies and vastly improve their quality of life. They're fighting every day for the treatment and cure which kids like Kyle and Lauren need in order to experience life at its fullest--and each day we are getting closer to making sure that more children don't face the death sentence implied with an SMA diagnosis.