It could be worse. Again, as she leaves class five minutes early in her green Racer wheelchair to avoid having to wind through the crowded halls on her way to the elevator. As she’s woken up in the middle of the night by her freshman sister, Claire, calling for her parents to help her roll over.
It could be worse. As she drifts off into a medicated sleep in a hospital bed in Salt Lake City, Utah, praying that she’ll wake up soon. Praying that the injection she is about to receive will help her to walk. Help her to climb stairs. Help her to be strong.
Becoming strong is why she’s missing over a week of school to be in Salt Lake City.
Lauren is part of a study that 24 other Americans are participating in. A study meant to improve the lives of the 1 in every 6,000 people in the United States who are diagnosed with Spinal Muscular Atrophy (SMA).
Lauren is afraid of being put under. She doesn’t want to get behind in school, or get lost in lectures or fail tests when she returns.
But Lauren has hope – for improvement and a future where she can walk for longer than a minute and climb stairs without a rail.
Hope. It’s a powerful word for the Gibbs. Hope has defined the last 13 years of their lives. So has SMA. The two go hand in hand for Gibbs.
Spinal Muscular Atrophy is an inherited disease that causes muscles to form improperly and then to deteriorate. That, Natalie says, is the medical way to classify SMA.
Then there’s her emotional way to describe it. A mean, unforgiving disease attempting to define her daughters, Lauren and Claire, since they were toddlers. A daily obstacle for her family to conquer. A monster that she refuses to let win.
Natalie and her husband, Tim, have limited ways to fight the monster. SMA is currently incurable and its diagnosis promises a deterioration that can’t be slowed by any known medication.
So Natalie fights by hanging posters and registering runners for an annual 5K fundraiser, sending the proceeds into SMA funds. She also scans the internet for new studies that the girls can participate in, new medicines that might become cures.
That was how Natalie came across Isis Pharmaceutical Co.’s most recent clinical study for SMA. It was at the beginning of 2012. The study involved removing spinal fluid and replacing it with an injection that would strengthen nerves affected by SMA.
She contacted Isis to see if Lauren and Claire could participate, but both were turned down.
With the study’s cut-off age set at 14, Lauren was just barely too old. A metal rod in Claire’s back that had corrected the 90 degree spine curvature prevented the younger sister from participating as well.
But that was only the first phase of the study. When Phase 2 was approved, the age range was extended to include 15-year-olds. The Gibbs were personally contacted by Kathryn Swoboda, a family friend and the doctor in charge of the Salt Lake City branch of the study.
That was in late September. The study began in November and in a little over a month, Lauren had a decision to make.
Committing to the study involved attending three sessions in Salt Lake City, each 11 days long. During each session, she would receive an injection of fluid into her spine.
Lauren was nervous. Not about the injection – a life of doctors’ visits and searching for cures had taken that fear from her. But Lauren knew that missing school could be costly.
Vice Principal Jeremy Higgins offered to record Lauren’s core classes and upload them to Youtube for her to watch from the hotel. With this solution found, Lauren felt more comfortable with leaving. By mid-October, the Gibbs had bought plane tickets for Natalie and Lauren to go to the first session of the study.
The majority of the medical procedures were done in the first two or three days that Lauren was in Salt Lake City. At first, she went through baseline physical tests so that the doctors could track the improvements they hoped the injection would make.
Then came the procedure. The injection itself didn’t scare Lauren- it gave her hope of new strength and possibilities for the future.
Being put under was a different story, and Natalie nervously comforted her daughter as Lauren drifted into a medicated sleep.
She received the injection on her fifth morning in Salt Lake City and spent the rest of the day lying down as the fluid settled in her spine. That was the worst day of the week.
The remaining days were spent watching her classes on Youtube and exercising with a physical therapist. On the last night, Lauren was put through the same physical tests as before.
Then, unsure of the results of the first injection, Lauren and Natalie flew back to Kansas City.
Claire and Tim were glad to have the pair back home after a week of being on their own in an unusually quiet house.
Lauren immediately assured the family that her legs felt stronger, but the Gibbs were unsure whether the new strength was real or just hopeful thinking.
“It’s not like this drug can fix us entirely, even if it works,” Claire said. “Our bodies are almost too messed up for it. We’re not perfect, and we’re never gonna be perfect. But we’re okay with that. It’s who we are.”
If the drug doesn’t work, Lauren won’t be phased for long.
She won’t have time. She’s too busy living, because Lauren isn’t satisfied with just attempting to live an ordinary life. She wants an extraordinary one.
Lauren and Claire fight everyday to free themselves from the pitying glances and aggravating questions that SMA brings them. From their chairs. From the weakness.
That’s why Lauren will be going to China next summer with her Chinese class, pulling ahead of her sister in their competition for number of countries visited. That’s why she’s zip-lined through rainforests in Mexico and parasailed in the Caribbean.
That’s why she stays committed to her wheelchair basketball team. Even though they have to drive for hours to find another team to play. Even though she’s too exhausted to lift her arms from her sides after the three hour practices every Saturday.
“You can’t let the disease win every time,” Natalie said. “Sometimes, I wonder why Lauren pushes herself hard, but I know why. She’s beating it. You have to beat it sometimes. That’s how Lauren does it.”
Her classmates recognize those big triumphs. What they don’t always see are Lauren’s little everyday triumphs, like playing violin in the East orchestra, despite her underdeveloped nerves that make rapid fingerwork difficult.
Like planning to go to college and live independently in a dorm, hopefully at Baylor University in Waco, Texas. Like joking with her parents that she wants to get as far away from Kansas as possible when she leaves high school.
Dreaming and planning on fulfilling those dreams. That’s a triumph. It’s something the Gibbs are thankful for.
It could be worse.
That’s a common thing to hear from the Gibbs. There are four types of SMA. Lauren and Claire have Types 3 and 2, respectively. Claire’s condition is one of the more severe stages of SMA.
But at least it’s not Type 1. At least their diagnosis didn’t include an expected life-span of 2 years. At least they can walk, attend school, ride in airplanes. And have hope for extraordinary lives. And have hope for winning this fight.
The Gibbs have been searching for a cure for SMA since they received the diagnosis 13 years ago. For those 13 years, they’ve been part of a cause that fights SMA.
But Lauren isn’t just settling for fighting SMA. She’s beating it.
Every time she shoots a basketball. Every time she visits another country. Every time she plans for her future, for attending college and living independently.
She’s currently part of a study trying to find a cure for her diagnosis. But beating SMA?
Lauren Gibbs does that every day.