Almost two years ago, a Texas man who had spent his professional life battling fires found himself engaged in a different kind of battle – a fight for his life.
This month, San Antonio firefighter Brad Hauer went back to work after 21 months spent combating the ravages of a rare and debilitating neurological disease – while racking up enormous medical bills and losing tens of thousands of dollars of income as he did so. Thankfully an innovative treatment has gotten Hauer back on his feet and back at work at the fire station, but he and his family are struggling under the tremendous financial burden that has resulted from his health battle. They also face a stark reality: the knowledge that Hauer’s illness will eventually take his life.
Hauer’s disease first took hold in November 2017. The husband and father of six was enjoying Thanksgiving dinner with his family when he suddenly collapsed with severe, excruciating muscle contortions. Hauer was rushed to the hospital, where doctors put him into a medically induced coma while they tried to save his life – and figure out what was happening to him.
Weeks of testing passed before medical experts were able to come up with a diagnosis: Stiff Person Syndrome (SPS), a rare, progressive disease that affects the nervous system, specifically the brain and spinal cord. Hauer’s symptoms included horrifically painful muscle spasms, stiffness and rigidity that rendered him immobile.
When Hauer was brought out of his coma 34 days later, he faced a new reality. The once-physically active firefighter had to relearn how to walk as well as figure out how to live with a disease that could render him completely helpless at any time without warning.
“I fell a lot,” recalled the Army vet-turned-paramedic/firefighter, who actually tore a rotator cuff during one of his episodes. “I didn’t even notice the torn rotator cuff, because the pain from the disease was so intense. It wasn’t until after they finally got the disease under control that I even realized that was going on.”
Since SPS is so rare, existing treatment options and research are minimal, and the disease has no known cure.
“In my case, we threw a lot of different things at it trying to find the answer,” said Hauer, who took anti-rejection medication, tried intravenous immunoglobulin therapy and underwent chemotherapy in attempts to stall the progress of the disease. The chemo treatment worked wonders.
“I felt better overnight,” he recalled. “But it practically took an act of Congress to get insurance to approve the second round, and then my kidneys and liver started to fail.”
Finally, doctors landed on a solution: They implanted a hockey-puck-sized pump near Hauer’s spine that delivers a muscle relaxant to his central nervous system, enabling him to function.
“It’s kind of a last-ditch treatment, but it’s working,” Hauer said. “Not many people have the pump, and we had to experiment with the dosage of medication that the pump delivers until we found the right levels. I still lock up sometimes, and it’s painful. But the episodes don’t hurt as much as the earlier spasms, and the pump has allowed me to get back to work.”
Hauer’s work as a firefighter and his commitment to staying physically fit are factors that likely kept him alive, according to his doctors.
“Every time I spasm, it burns up muscle,” Hauer explained. “The doctors told me that because I was so fit, my body had enough muscle to burn while we were trying to figure out the treatment. In my case, working out literally saved my life.”
Hauer was once an intense, hundred-mile-per-hour type of guy, but his life – and priorities – have been turned upside down.
“I’m learning to reel myself in and slow down,” he said. “And that’s not me. But I’ve got to adjust to this new normal. I’ve got a disease, and I’ve definitely realized what truly matters in life: people, especially my family.”
Hauer’s wife, Margo, has been by his side during the entire journey. She quit her job to provide around-the-clock care, but with the loss of both their incomes and having only limited insurance coverage, the Hauer family was barely able to make ends meet. Friends planned fundraisers, and the community rallied in support.
“The fire department adjusted the rules so they could carry me on their sick-leave bank up to the two-year point,” said Hauer, who has been a Texas firefighter for 19 years. “We’re in a pretty deep financial hole, so I am grateful to be able to get back to work.”
Hauer has returned to the San Antonio Fire Department as a chief’s aide, the same job he had before his collapse. The job is less physically demanding, and he calls it a godsend, given his current health challenges.
“I’m involved in the command aspect of it, responding and directing the units, talking to people, helping with occupant services and cause and determination,” he said. “I don’t have to go into the fire unless it’s a big one.”
Overshadowing everything is the knowledge that SPS is a terminal illness that no one has yet beaten. Knowing this, Hauer is focused on providing as much stability as he can for his wife and their six children now – and in the future. They are trying to pay off their bills, and he wants to get his family into a permanent home. Spending as much time as possible with his family is also at the top of his priority list.
“I am going to do what I do and not live in fear of this, but it’s always in the back of my head,” he said. “My priority is to take care of my family. The longest anybody has ever lived with SPS is seven years. My goal is to beat that guy.”
To help Brad and Margo Hauer, visit their GoFundMe page at www.GoFundMe.com/BradHauer
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