Laura Watson is team captain of Laura’s Dream Team and fundraising committee co-chair of the North New Jersey Cure SMA Chapter. On Saturday, June 22, 2019, Laura is joining over 150 people at the 4th Annual North Jersey Walk-n-Roll.
My name is Laura Watson. I am 29 years old and was born and raised (and still reside) in Somerset County, New Jersey. I graduated from Hillsborough High School in 2008 and went on to attend Rutgers University where I received a bachelor’s degree in Journalism and Media Studies, lived on campus, and was an active member of my sorority. Since college, I have explored a few different paths, but more recently, I channeled my love for fashion and opened my own home-based women’s clothing boutique. In my spare time, I enjoy hanging out with my friends and family, traveling, going to the beach and exploring the city, sipping on classy cocktails, and listening to live music.
Thus far, I sound like a pretty typical 20-something. But at the age of nine months, I was diagnosed with spinal muscular atrophy (SMA) type II, which is a genetic, neuromuscular condition. I am the first and only person in my family affected by this disease. My family didn’t know what to expect for me. The only thing that could be done was to treat the symptoms the best way the medical professionals knew how and to pray for the best and longest life possible.
Since the beginning, my family was dedicated to giving me a “normal” life and raising me just like any other child, despite my diagnosis. I never crawled or walked. As a child, I spent time in the hospital or home from school due to lung infections because of my weakened breathing muscles and inability to effectively cough. I rely on a feeding tube and various breathing machines every day to keep me healthy. I cannot shower or dress myself, nor do my own hair and make-up. I am unable to lift my arms to greet my loved ones with a hug – all things that most people take for granted. I only have enough muscle strength to drive my motorized wheelchair via a joystick, use my computer with a virtual keyboard, talk softly, give the cheekiest eye rolls, and make facial expressions that speak a thousand words!
Now, as an independent adult, I love volunteering for the community, especially the SMA community. I am the Co-chair of the Fundraising Committee for the North Jersey Cure SMA Chapter. Helping individuals and families on their journey living with spinal muscular atrophy is my heart and soul.
I grew up in a time where there was no treatment available for SMA. However, thanks to our dedicated community and researchers, in December 2016, Spinraza, the first-ever treatment, which targets the underlying genetics of SMA, was FDA-approved! This is the biggest gift the SMA community has ever received and it has forever changed the landscape of the disease.
In November 2017, I had the privilege of receiving my first dose of Spinraza. In the last year and a half, I have received seven subsequent doses of the drug. It has given me the physical strength to speak louder and clearer, take deeper breaths, enhance my smile, and endure a long day with little to no fatigue. These gains may seem insignificant to some, but to me, they are a huge blessing in which I am eternally grateful.
Today, because of treatments like Spinraza and advances in medical care, people with SMA are living great lives. But our work is not done here. We’re on the verge of further breakthroughs to deliver more effective therapies that will continue to change the course of SMA for everyone affected—from infants to adults—and eventually lead to a cure.
As I close in on my twenties, I’m enjoying my young adulthood—living in the moment, making some mistakes along the way, and constantly learning about who I am (I think I almost have it figured out!). I am excited to continue building a life of my own and chasing my dreams. I have never once questioned why God gave me this life. I know He chose me to live with SMA so that I can teach and inspire others.
Cure SMA has paved the way in research and development toward new treatments for the disease—giving so much hope for survival and a better quality of life for those affected. I feel honored to be on the forefront in my efforts to creating a brighter future for those living with spinal muscular atrophy.