By way of introduction: My name is Alecia Maringola. Born and raised in Connecticut, I’m 35 years old, and a sister to an older brother, Ryan, and a daughter to Laura and William Maringola. At 13 months of age, I was diagnosed with a rare, genetic disease called spinal muscular atrophy (SMA).
As you could imagine, this was news that every parent fears about their child. I think it was most difficult for my mother to acknowledge and accept. Most mothers anticipate a healthy life for their young children. There are milestones you want to see them achieve, and I know this burdened my mom’s heart. She felt broken and frustrated because she couldn’t put a band-aid on it and walk away.
When my parents initially received the doctor’s prognosis, it was anything but hopeful. The doctor bluntly predicted, I probably wouldn’t live past age 3. I couldn’t imagine being my parents at that moment as they received such devastating news.
The news carried special weight coming from the doctor they trust, someone they look to for answers and solutions. But it appeared as the doctor put us at a dead-end before we took a step onto the new path we were about to embark on. It seemed so rigid and without room for any fact-based optimism.
However, anyone who knows my mom knows that she did not accept those vague or desperate words as the only path. There is power in what you believe, and how you accept things, and she did not, and would not, believe those words. My parents, being strong in their faith, prayed for me. Their faith deepened as they continued to seek the Lord for answers and guidance.
And, by the grace of God, I certainly made it past age 3, and might I mention, I’m one of the loudest and most expressive people in my family. Walking was and is the only thing I’ve never experienced besides in braces, and that was a huge accomplishment.
As the years passed, I got to enjoy life like any other healthy, young child. I played with my friends and cousins. I enjoyed birthday parties, sleepovers, and vacations with few complications. My family did everything and anything to include me and make me feel as “normal” as possible. I look back on my childhood today and cherish every moment and memory I had.
Nevertheless, my physical strength was marginal from ages 3 to 10. Preadolescence is where the nature of my disease started to affect the way I functioned in everyday living. Physically, my body was starting to change.
Scoliosis was showing up in my spine and it became severe quite rapidly. The realization of that happening was hard to swallow. It’s one thing being told something and not believing it. It’s another thing being told something’s going to happen, not believing it, but then watching it happen.
This was a huge test of faith for our family. Up until this point, we had gone about life without too many setbacks. However, challenges started creeping up in all areas of my life. Visiting friends and family at their homes was difficult because I couldn’t sit in a “regular” chair, and getting sick was, and still is, detrimental to my health. My lungs weren’t functioning properly due to the curve in my spine. The common cold would take weeks to recover from compared to the average person.
Grappling with this concept scared me. However, these things were becoming reality. It was a shift in life I wasn’t fully mentally prepared for, and serious life decisions were cropping up.
One of the biggest challenges we faced during those years was when the curve in my spine started to progress. It was starting to affect my daily life. We needed to seek medical advice to learn about possible options we had.
Doctors were pushing spinal fusion. This is where they would place a metal rod in my spine to correct the curvature. This was a serious decision to make. My family and I discussed the positives and negatives of either getting it or not, and the negatives outweighed the benefits. This was major surgery that would take months to heal from, and that’s if I survived. The survival rate wasn’t high enough for me, or my family, to agree to it, so we decided against it.
This was in 1993 and the surgery was much more invasive than today. I won’t deny, however, there were times I second-guessed myself; but seeing how far I’ve come without it, makes me believe we made the right decision. We went with an alternative option of using a brace that supports my posture, and it’s done me well. I’m a strong believer that things happen for a reason, and it just wasn’t God’s plan for me, despite what the doctors were pushing.
Something I learned through the first decade of life was how important it is to be your own advocate. My mom spent endless hours researching my disease. Finding alternative medicines, therapies, and diets that have truly saved my life because she listened to her intuition. I’m forever grateful for that.
We also learned, just because a doctor has credentials, doesn’t always mean they have the right answers. Not trying to put down doctors at all. I have many amazing doctors that have helped me tremendously, but what I’m trying to point out is, I know my body the best. If something doesn’t feel right, it’s important that I shouldn’t be afraid to speak up. We all have a different version of whatever disease we suffer from. None are identical. What one shoe fits on another may not fit for all. Everyone is their own, unique person and deserves to be heard.
This is just a small portion of the experiences I’ve been through living with SMA. I hope that as I continue to share my stories, it will help educate and bring greater awareness on a personal level for care in the world of rare diseases.