Briggs Schaffer: The newest St. Louis Blues fan doesn’t let his disease hold him back

QUINCY—Eleven-year-old Briggs Schaffer, of Quincy, wasn’t necessarily a fan of professional hockey until last month when he went to his first Blues game.

Perhaps it was because Briggs and his family members were honored guests on Nov. 30 at the Enterprise Center in St. Louis when the Blues beat the Buffalo Sabres 6-4.

It could have been because Briggs met Blues captain Brayden Schenn. The family also watched the game from a personal suite while enjoying a buffet of chicken strips, hot dogs, a taco bar and more.

His new love for hockey was likely sparked by all of those things, but maybe Briggs also saw himself in some of the grit and determination that happens out on the ice.

Briggs, a fifth grader at Rooney Elementary, has been fighting a condition known as Spinal Muscular Atrophy (SMA) for most of his life. When a representative from St. Louis Blues reached out to Barnes-Jewish Children’s Hospital to choose two families to give tickets to a game, the Schaffer family was one of the families chosen.

SMA is a rare genetic disorder affecting the motor neurons, which are nerve cells in the spinal cord that control voluntary muscle movement. Because the muscles cannot respond to signals from the nerves, they atrophy—or weaken and shrink.

Briggs was diagnosed with SMA when he was 8 years old, but it was a long journey to reach a diagnosis that would finally lead to treatment. Briggs leg muscles weakened but did not shrink.

As a toddler, Briggs could crawl and walk but he could not run. 

Lindsay Schaffer, Briggs mom, said Briggs began falling down a concerning number of times throughout the day around the same time the pandemic hit. 

She and her husband, Briggs’ father Jeremiah Schaffer, thought it could have been from COVID.

“I am talking 15-20 times per day—his legs would just give out and he would be so tired,” Schaffer said. “We honestly blamed it on COVID because everyone’s health kind of went down a notch around that time.”

In February 2021, during second grade, Briggs fell at school and couldn’t get back up.  

Briggs went to a chiropractor after exhausting other medical resources with few answers—usually a diagnosis of flat feet and would eventually grow out of.

The chiropractor saw something more than flat feet was going on.

Instead of an adjustment, Briggs received a recommendation from the chiropractor to seek a physical therapist.

“We went to a local physical therapist the next day. I would say 30 seconds into the visit—it was in her face—she knew,” Schaffer said.

Natalie Stratton of Advance Physical Therapy is now Briggs’ regular physical therapist. She helped the family get on track for the genetic testing necessary to receive an SMA diagnosis.

Several days later, after a clear MRI, Briggs’ doctor in Quincy expiditied him to Barnes-Jewish Children’s Hospital Neuromuscular Department.

Briggs’ treatments for Type 3 SMA began two weeks later at Barnes-Jewish Children’s Hospital. 

Type 3 is a milder form of SMA, also known as Kugelberg-Welander disease. Briggs’ muscles had weakened, but they did not shrink as is common in other types of SMA.

On the outside Briggs has always looked like any other growing boy, but his leg muscles weakened as he grew.

“That is why it kept getting missed,” Schaffer said.

The treatment is a spinal tap, requiring five milliliters of spinal fluid and an injection of five milliliters of a drug called Spinraza, an FDA-approved treatment for SMA.

Schaffer said the treatment, which Briggs takes quarterly, is painful.

“They first gave him an anti-anxiety medication that would help him calm down,” Schafer said. “Then they tried several times to put him under anesthesia, but that carries risk. They didn’t want to have him put under four times a year.”

Briggs successfully completed his 11th treatment without sedation on Nov. 28. His life looks a lot different now.

Schaffer said he went from falling 15 to 20 times per day in 2021 to maybe once in the four months between treatments.

“Before his diagnosis, life for Briggs was just school and rest. Because he did not have protein in his muscles, it took everything he had just to get through the day,” he said. “If you ask Briggs what his limitations are now, there are none.”

Schaffer said he does anything any other boy does. SMA doesn’t stop him from playing soccer at recess, although he sometimes faces opposition from classmates.

Briggs isn’t able to run. Sometimes it makes him vulnerable on the field to bullying.

“I remember one day after he had a pretty rough day at school and had been razzed pretty hard—you know because he’s eleven. Sometimes playing soccer looks different for him. I asked him one day if it bothers him to have SMA, and he said, ‘It doesn’t bother me as much as it bothers everyone else,” she said.

She added that Briggs has a group of loyal friends.

“He just had his birthday party and they were out there playing hide and seek and tag—he got tagged a lot. (His friends) have his back, which is nice,” she said.

He plans to join a trap shooting team and enjoys playing golf. He hopes one day to be involved in the military, possibly engineering weapons. Briggs can also crack a good joke.

He’s hilarious, he’ll tell us ‘Well you know, I kind of missed out on a few genes, but I did get the best looks in the family,” Schafer said.

Briggs will also now be a hockey fan for life. Briggs came prepared when meeting Schenn.

“He has been working on looking men in the eyes and shaking their hands. When (Schenn) walked, that’s the first thing Briggs did,” she said. “He thanked us for being his guest that night. He was a super humble guy.”

Schenn signed two books along with Briggs’ jersey and a pair of his shoes. He also signed two pucks—one given to Briggs by the team and another puck with a special purpose.

On the way there, Briggs saw a friend of his on the highway who was going to the same game with his family.

During a break, the Schaffer family snuck off to the gift shop to purchase another puck for Schenn to sign for Briggs’ friend.

“After the game, we met up with his buddy. It was one of the coolest moments when they hugged. Briggs was like, ‘Yeah. He’s my bro for life,’” Schaffer said.