Jack is a seven-year-old from Harlingen, Texas, who has a love for filmmaking and acting. Jack also lives with spinal muscular atrophy type one. Though he was diagnosed at 7 weeks old, Jack started representing signs of SMA at just 3 weeks old. He stopped moving his arms, legs, and had no ability to hold his head. Seven years ago, anyone receiving a diagnosis of infantile onset SMA was told that their child wouldn’t survive to live past 6 months. As Jack’s mom, when I heard those shocking words at diagnosis it was a race against time for me.
Since I was a young girl, I’ve always prided myself on my ability to adapt. So I adapted to our new story. I quickly learned everything about SMA, anything that could make Jack’s life a little easier. As an infant, Jack didn’t move anything but his eyes. I hadn’t realized how everything in our body is a muscle and SMA was eating it all away. He utilized a BiPap 24/7, lost the ability to swallow, and used a feeding tube. At four months old, I was able to have Jack screened and be accepted into a phase 3 clinical trial to treat the genetics of SMA. Slowly over time, the clinical trial drug, Spinraza, started to slow the progression of SMA and even reversed symptoms. It took three years for Spinraza to give Jack the strength to hold up his head and sit independently. My son put in years, months, days, and hours into therapy to achieve movement that some of us take for granted.
Over time, Jack slowly got better. He never gave up. I never gave up. He started needing less time on his ventilator. He moved intentionally without exhaustion. Jack started school and made friends. He pushes his own manual wheelchair. When the pandemic started, he grew a love for food, which he hadn’t eaten by mouth since he was 4 months old. Now, he eats almost everything with some modification. Jack loves to go eat mahi-mahi at Blackbeard’s on South Padre Island. He can even ride roller coasters; yes you read correctly, roller coasters! In the last year, Jack has grown the ability to ride most rides at Disney with support help from me. We just took our third trip to Disney in the last year. Where we live, we don’t have access to any accessible sports leagues, so riding roller coasters is like Jack's personal sport! We are grateful for his ability to fly with us so that we can travel and experience new cities and cultures.
If someone showed me our future seven years ago, I don’t know that I would have believed them. But, little did I know that being able to adapt is a characteristic I passed down to my son. Everyday Jack adapts. He adapts to the metal holding his spine straight, and to the workspace he’s given at school. Jack adapts his surroundings to make them accessible. Dolly Parton once said, “we cannot direct the wind, but we can adjust the sails.” I think Jack is sailing nicely. Never give up.