Photo by Hannah Wingert
When Beth Syverson first noticed some weakness in her leg and ankle in the summer of 2023, she assumed it would improve on its own. “I thought maybe I pulled something,” she explained. But then it started getting worse so she decided a trip to the doctor was in order. She left the clinic that day with a referral to neurology.
In January 2024, Beth had an electromyography, or EMG, to test how well her muscles and nerves were working with each other. She and her husband Jordan remember how the doctor stepped out of the room for a few minutes and then came back in to deliver the diagnosis. Often, more tests will be run to rule out other conditions before diagnosing ALS, but the doctor explained that the results of the EMG were clear. Beth had ALS or amyotrophic lateral sclerosis. “It was devastating,” Beth said. “I think I just cried the rest of the day. How do you even respond to something like that?” She and Jordan had only been married for 18 months at that time.
“We hadn’t even been married two years and then she got a fatal diagnosis. How can this be real?” Jordan said, explaining his feelings at the news. The doctor informed them that there wasn’t much known about ALS or its cause, and that there was nothing that could be done for Beth. The only information given to Beth was that ALS is inevitably fatal, but a specific time frame couldn’t be given other than the fact that Beth’s ALS would more than likely progress over months, not years, given its seemingly rapid onset.
ALS is also known as Lou Gehrig’s Disease, so named for the baseball player who was diagnosed with it. ALS.org describes it as a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord. People affected may lose the ability to speak, eat, move, and even breathe as the motor neurons die, destroying the brain’s ability to initiate and control muscle movement. There is no cure. Ninety percent of all cases of ALS have no known family history or genetic cause, with only 10% being inherited genetically. The average person has a one in 400 lifetime risk for developing it, with most people developing it between age 40 and 70. It also affects more men than women. While rare, people in their 20s and 30s and sometimes even children are diagnosed with ALS.
Being a 34-year-old female, Beth’s case is rare. Her ALS appears to be progressing quickly, with doctors determining that she’s already near the end stages despite its seemingly recent appearance. It is possible that Beth had symptoms earlier, but they were so minor that they could have gone unnoticed.
When she was diagnosed, Beth was working at Harmony Kids in the infant and toddler room. Several months later, her condition had progressed to the point that she was unable to continue working. Now, nine months after receiving her diagnosis, she cannot walk and is in a wheelchair full time. Her hands and arms are weak, and she struggles to dress and feed herself. “There’s not a whole lot I can do that I don’t need help with,” she said. “It’s frustrating at times, but it’s humbling. It’s just kind of a reminder that our Lord created us with a need to be in community and fellowship with each other. We’re not meant to do anything alone.”
Jordan works for his brother and also runs his own lawn care business, which has allowed him the flexibility to be there for Beth through her medical appointments and for her day-to-day needs. Both of their families have stepped in to help care for Beth and Jordan as well. Beth’s family lives in the Rochester and Chatfield areas and is helping whenever they are able while Jordan’s family lives more locally to Beth and Jordan. His parents live across the field from them and everyone else in his family is within a radius of just a few miles. Somebody from the Syverson family comes over at least once a day to help with meals and things around the house. “It’s been a blessing to have his family close,” Beth said. Their home church, the Root River Community Church, has been very encouraging and supportive as well, bringing meals, coming to visit, etc.
They may have received a grim diagnosis, but Beth and Jordan aren’t giving up the fight. They’ve visited several different natural clinics to try alternative medicine, but haven’t seen improvement with any of them. However, they recently found out about a clinic in Canada that has had a lot of success with stopping the progression of ALS by working with the patient’s biochemistry. Only one patient has ever failed the program and that was due to how advanced her ALS was. Beth and Jordan will be going to Canada for a three-month program where they will stay on-site. For the nine months after that, they will continue to work with the clinic remotely. “It’s very exciting and hopeful,” Beth said. One thing the clinic looks at to determine whether a patient is a good fit for the program or not is their support system at home as people are more likely to stay faithful to the daily exercises and supplements if they have family and friends to encourage them. Beth checks all the boxes for that.
Because the clinic in Canada is not a traditional medical clinic, the cost for treatment is all out of pocket, and the total for a year is $180,000. To help with the expense, Beth and Jordan’s family has put together several fundraisers. On September 28, they held a 5K run followed by a pancake and sausage brunch, silent auction and carnival on the 29th. A GoFundMe account has also been set up.
Beth credits her faith with getting her through each day. “If I did not have a relationship with Jesus, I probably would have gone down even faster because that is my only strength. It comes from the Lord,” she said. “We have to continue to bring it back to the truth that God is loving and kind and He’s with us every step of the journey no matter how hard it is.”
Jordan commented that there have definitely been times for both of them where they’ve questioned why God would allow them to go through this, but even through that, they’ve held onto their faith. “When she was first diagnosed with ALS, she said, ‘If one person comes to the Lord through my journey, that’s enough,’” Jordan explained.
Beth agreed, adding, “It’s been our prayer the whole time that whatever happens, the Lord will be glorified through all this.”
You can find Beth’s GoFundMe page at gofundme.com/f/loving-beth-syverson.
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