ROCHESTER, Minn. — Fifteen-year-old Ben Merck of West Fargo has been struggling with a neuromuscular condition since May.
For more than five months, his doctors searched for a diagnosis, trying to find the answers as to why the West Fargo Sheyenne sophomore was slurring his speech and had difficulty breathing and swallowing.
Ben’s condition remained mostly unknown until recently, when he was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.
The disease was Ben's parents', Mark and Linda Merck, worst fear. And on Tuesday, Oct. 22, at the Mayo Clinic in Rochester, Minn., that diagnosis became a reality.
ALS affects a person’s motor neurons — the nerves in the brain and spinal cord — and causes a loss of muscle control, making it difficult to eat, breathe, walk and talk. It’s rare for someone so young to be diagnosed with the disease, which usually develops in adults between the ages of 40 and 70.
At the Rochester-based Mayo Clinic, Ben had an EMG (electromyography) test on Monday, Oct. 21, one of the key tests in diagnosing ALS, as well as a lumbar puncture to get fluid from his spine the following day.
When the Mercks went back to the hospital Tuesday afternoon to speak with the neurologist about the test results, a social worker had been added to the appointment. At that moment, Mark and Linda knew they would be getting some bad news — the social worker was there to offer emotional support and pad the blow they were about to receive.
The doctor said the testing was conclusive to ALS.
“That was a hard day,” Mark said.
Ben tweeted out this message Tuesday evening:
"Day two I found out some heart breaking news I found out I have ALS and mine is progressing so fast I might pass away from it it’s like battling cancer it’s a sit and wait game but I’m still going to fight my ass off to win this battle please keep me in your thoughts and prayers."
At first, Ben was confused and trying to process what he and his family had just heard.
“(Ben) was kind of thinking, is there something with his body that could maybe change — he's lost a lot of weight, so he thought maybe if he gets his weight back and the strength back, that that would fix it,” Mark said.
Day two I found out some heart breaking news I found out I have ALS and mine is progressing so fast I might pass away form it it’s like battling cancer it’s a sit and wait game but I’m still going to fight my ass off to win this battle please keep me in your thoughts and prayers
Day two I found out some heart breaking news I found out I have ALS and mine is progressing so fast I might pass away form it it’s like battling cancer it’s a sit and wait game but I’m still going to fight my ass off to win this battle please keep me in your thoughts and prayers— Ben Merck (@MerckBen) October 22, 2019
Linda, Mark, the doctor and members of the care team explained to Ben how the disease will progress and affect his ability to move and to breathe.
“It was hard. It’s not something anybody wants to hear; that you might end up needing wheelchairs and mobility devices and things like that — things to help you communicate,” Mark said. “It’s all things you don’t want to deal with.”
The news of Ben's diagnosis immediately prompted a response from the community, and his longtime teammates. Sheyenne changed the theme of the Mustangs' final regular-season football game against Fargo South to Houston Rockets red, Ben's favorite team, at 7 p.m. Friday, Oct. 25, at Essentia Health Mustang Stadium.
“Ben has always been someone who will go with the flow. He'll find a way to make it so he's OK with it. That’s just how he is. He copes and he finds a place in his heart and in his mind to make things work,” Mark said.
ALS is different for everybody. If Ben and his family can keep his breathing healthy and aid with his mobility, he could live a decent life for a long time, Mark said.
“I don’t think they like to say years,” Mark said. “That was definitely in our minds, ‘How long do we have?’ The doctors said the average is probably five years for someone.”
Those are the hard things that you try and put in the back of your mind, Mark added.
Ben is familiar with Stephen Hawking, who had a slow-progressing form of ALS and lived with the disease for more than 50 years. He wants to match or beat how long Hawking lived after his diagnosis.
“He has the right attitude that this is going to be a part of his life and he's gonna fight it as hard as he can,” Mark said. “He wants to fight this. He's going to do everything he can to stay as active as he can, do the things he loves to do as well as he can, be with his friends and do all that stuff that a teenager should do.”
In the wake of @MerckBen recently vein fb diagnosed with ALS we will be changing Friday Nights theme to Red/Houston Rockets as it is Ben's favorite team. Game starts @7 at Sheyenne vs Fargo South. Stay strong and keep fighting buddy #PrayForBen pic.twitter.com/fSDQguP36i
In the wake of @MerckBen recently vein fb diagnosed with ALS we will be changing Friday Nights theme to Red/Houston Rockets as it is Ben's favorite team. Game starts @7 at Sheyenne vs Fargo South. Stay strong and keep fighting buddy #PrayForBen pic.twitter.com/fSDQguP36i— SHS Student Section (@stangSec) October 23, 2019
The disease was a surprise for the Mercks, who thought ALS had been ruled out. Over the past five months, Ben had been tested for a multitude of motor neuron diseases, including myasthenia gravis, as well as other conditions that have similar signs and symptoms — muscular dystrophy, spinal muscular atrophy and Kennedy’s disease. All the tests came back negative.
“It was kind of a shock, because I thought we had ruled this out — that all the testing and genetic testing had ruled this out,” Mark said.
Last month, Make-A-Wish granted Ben and his family a four-day trip to Houston, where Ben was able to meet Houston Rockets guard James Harden, the 2017-18 MVP of the NBA, and enjoy a practice and game courtside.
Ben’s symptoms continue to get worse, and have escalated rapidly since they first appeared in May.
The diagnosis came at the heels of a tough year for the Merck family. Linda, Mark’s wife and Ben's mom, had a stroke earlier this year. She was unable to drive for some time, but eventually got her license back, just a day before the couple took Ben to the doctor for the first time.
Mark said he tries to take it one day at a time.
“It’s cliche but you have to do it, because you need to keep on living and doing your best,” Mark said.
A fund is set up at Gate City Bank for the Mercks and is labeled “Benefit of Ben Merck.”