When I was diagnosed with spinal muscular atrophy (SMA), the disease was foreign to so many. My parents and other family members had never heard of it, nor were they aware of the excessive complications of SMA. Moreover, many doctors had minimal knowledge about the nature of the disease as well.
It was 1986, and the amount of research or funding put into SMA was little to none. This not only made it very challenging for my parents to know how to care for me, but it also created the difficulty of finding other families who were facing the same situations.
My mom spent the first several years of my diagnosis bringing me to several specialists to gain some answers. I can’t imagine the fear and frustration she carried with such limited resources and knowledge about how to care for her sick child. There wasn’t the luxury of social media or networking platforms, such as Instagram and Facebook.
Instead, my parents spent countless hours researching at libraries, making phone calls, and joining any related groups they could find for support. I can remember many nights of tears and disappointments. Some days we didn’t know where to turn next. But, my mom was a fighter, and she knew if she searched hard enough, she would find the answers she was looking for.
Read about experimental therapies for SMA
If it was not for the unconditional love, courage, and determination of families like my own, I don’t believe the advancements in the SMA community would be where they are today. The number of fundraisers, donations, prayers, and programs created through persistent and hard-working families has helped lift the death sentence of this disease. The strength of coming together to fight for a specific cause is powerful and effective.
I rejoice now, living in an era when SMA has been gifted the privilege of a whole month (August) dedicated to awareness. What was once a rare and unknown condition is now well known all over the world, and it’s receiving treatment options that once were thought impossible. I’m so thankful for the families, doctors, and citizens who never gave up on their search for a cure. They’re the true heroes that paved the way to keep SMA a nightmare of the past, and a success story for the present and future.
SMA Awareness Month feels surreal in comparison to where it started. I feel honored to be living the experience of seeing it go from something rare to breaking headlines in the news. Nevertheless, the passion, love, and admiration the SMA community generates for one another make us all feel like one big family. The common bond we have concerning our struggles is what makes it easier to find strength and perseverance.
Nevertheless, although we haven’t developed an actual cure, we have come so close. We will continue to pray and fight until we see SMA fully conquered.