As my 22nd birthday rapidly approaches, I almost can’t comprehend it. The thought of my birthday has seemed surreal for the past several days.
To most people, turning 22 probably isn’t that big of a deal. You don’t get to do anything new. Your friends start to tease you about how old you’re getting and point out every time you can’t remember something. What’s so special about it?
It’s special for me because I wasn’t sure I’d live long enough celebrate it.
When I was diagnosed with spinal muscular atrophy (SMA) as a baby, my family was told I probably would not live past my third birthday. Despite the grim prognosis, we didn’t give up, and miraculously, we did get to see my third birthday — and 18 more!
The past 22 years haven’t always been easy. My family and I have had our fair share of struggles. And yet, for every hardship I have encountered in my life, I have far more reasons to celebrate.
By the grace of God, I have overcome the odds that were stacked against me and lived a life full of joy and blessings. As I reflect on the years that have led to this birthday, I am reminded of the many amazing opportunities and experiences I have had.
I have loved to travel from a young age, and I’ve been fortunate enough to visit some beautiful places with my family. We have attended the Cure SMA conference at Disney World, learning with other SMA families from around the globe and enjoying the magical attractions of the Disney parks. We have spent time in Virginia Beach listening to the gentle roll of the ocean waves as we explored the wheelchair accessible beach and watched for dolphins playing in the sun.
Most recently, we journeyed to Niagara Falls, where we had spectacular views of the water cascading over the cliffs, visited some of the best local destinations, and had a lucky encounter with some kind strangers who helped to brighten our day.
Here at home, I have been given opportunities to be an active member of the community. One of my favorite places to spend time is Turnstone, the local center for the disabled. I became involved with this organization around the same time that I reached my milestone third birthday.
Over the years, I have greatly benefited from the services they offer, and today I am proud to say that I am still involved as a client and an enthusiastic volunteer. I look forward to the days I spend there chatting with my wonderful friends, laughing about our adventures together, and working on new art projects.
As a volunteer, I have the privilege of giving back to my Turnstone family in so many exciting ways. My volunteer days are often what I look forward to the most. I eagerly anticipate new opportunities to be part of a group that has contributed so much to my personal life and to the community.
In the medical world, I have witnessed the recent Food and Drug Administration approvals of two SMA treatments, Spinraza (nusinersen) and Zolgensma. While currently I am not eligible for either of these treatments, I love seeing the impact they are having on the lives of others. Much like my upcoming birthday, these were things I wasn’t sure that I would see.
One of my latest accomplishments is becoming a columnist here at SMA News Today. I have had a lifelong dream of being a writer that my family and my teachers have encouraged.
Now, not only is that dream being fulfilled, but I also have the immense pleasure of working with an incredible group of people that span many countries, ages, and abilities. I already had the honor of calling some of my co-workers my friends, and now I am building new friendships with even more of my fellow BioNews Services staff members!
Lastly, one of my greatest blessings is my family. Through the good and the bad, my family — especially my mom — has stood faithfully by my side. For 22 years, they have constantly loved and supported me. I wouldn’t be where I am today without them.
While many people consider aging to be a negative thing, I will continue to look forward to each new number and every blessing that comes with it.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.