For more than five months, his doctors sought a diagnosis and tried to find answers to why the second child of West Fargo Sheyenne blurred his speech and had difficulty breathing and swallowing. Ben's condition was largely unknown until recently diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig's Disease.
Ben's parents Mark and Linda Merck had the worst fear. And on Tuesday, October 22, at the Mayo Clinic in Rochester, Minnesota, this diagnosis became a reality.
ALS affects a person's motor neurons – the nerves in the brain and spinal cord – and leads to a loss of muscle control and complicates eating, breathing, walking and talking. It is rare for such a young person to be diagnosed with a disease that usually occurs in adults between the ages of 40 and 70 years.
At the Mayo Clinic in Rochester, Ben performed an EMG (electromyography) test on Monday, October 21
When the Mercks returned to the hospital on Tuesday afternoon to discuss the test results with the neurologist, a social worker had been added to the appointment. At that moment, Mark and Linda knew that they would get bad news – the social worker was there to offer emotional support and cushion the blow they would receive.
The doctor said the tests are conclusive for ALS.
"That was a tough day," said Mark.
Ben tweeted this news Tuesday night:
"On the second day, I learned some heartbreaking news, I have ALS and mine is progressing so fast that I could pass away as if I was fighting cancer Sit and wait, play, but I'll still fight my ass to win this fight, please keep me in your thoughts and prayers. "
At first, Ben was confused, trying to digest what he and his family were doing just heard.
"(Ben) thought there was something about his body that might change – he lost a lot of weight, so maybe he thought if he got his weight back and got the power back, that would fix it, Mark said ,
Day Two I found out some heartbreaking news I found out that I have ALS and my progress is so fast that I could pass away as if I was fighting cancer. It's a sit-and-wait game, but I'll still do it fighting my ass to win this fight. Please keep me in your thoughts and prayers.
– Ben Merck (@MerckBen) October 22, 2019
Linda, Mark, the doctor and nursing team members told Ben how the disease developed and how his movement developed – and respiratory capacity.
"It was hard. Nobody wants to hear that. that you end up needing wheelchairs and mobility aids and the like – things that help you communicate, "said Mark. "It's all things you do not want to deal with."
The news of Ben's diagnosis immediately triggered a reaction from the community and its longtime teammates. Sheyenne changed the theme of the Mustangs' most recent regular football game against Fargo South at Houston Rockets Red, Ben's favorite team, at 7pm. Friday, October 25, at the Essentia Health Mustang Stadium.
"Ben has always been someone who goes with the stream. He will find a way to make it so he agrees. That's the way he is. He gets along and finds a place in his heart and in his mind to get things going, "said Mark.
Mark Merck and his son Ben recently made a Make A Wish trip to Houston to meet NBA star James Harden.
David Samson / The Pioneer
ALS is different for everyone. If Ben and his family can keep their breathing healthy and promote their mobility, he could lead a decent life for a long time, Mark said.
"I do not think they like to say years," said Mark. "That was definitely in our minds: how long have we got?" The doctors said that the average for someone is probably five years.
These are the hard things you try and put in the back of your mind, Mark
Ben knows Stephen Hawking, who had a slow-moving form of ALS and lived more than 50 years with the disease how long Hawking has been living after his diagnosis.
"He has the right attitude that this will be part of his life and he will fight it as hard as possible," said Mark, "He wants to fight this will do anything to stay as active as possible, to do the things he loves as much as he can, to be with his friends and to do all the things a teenager should do. "
In the wake of @MerckBen who was recently diagnosed with ALS, we will switch the Friday Nights theme to Red / Houston Rockets as it's Ben's favorite team. The game begins @ 7 at Sheyenne against Fargo South. Stay strong and keep fighting, buddy #PrayForBen pic.twitter.com/fSDQguP36i
– SHS Student Section (@stangSec) October 23, 2019
The Disease surprised the Mercks, who believed ALS had been excluded. In the past five months, Ben has been tested for a variety of motor neurone diseases, including myasthenia gravis, as well as other diseases with similar signs and symptoms – muscular dystrophy, spinal muscular atrophy and Kennedy's disease. All tests were negative.
"It was a kind of shock because I thought we had excluded this – that all testing and genetic testing had excluded that," said Mark.
Last month, Make-A-Wish granted Ben and his family a four-day trip to Houston, where Ben got to know the Houston Rockets Guard James Harden, the 2017-18 MVP of the NBA, and was able to enjoy a training session.
Ben's symptoms continue to worsen and escalate rapidly since they first appeared in May.
The diagnosis was just a difficult year for the Merck family. Linda, Mark's wife and Ben's mother, had a stroke earlier this year. She was unable to drive for a while but eventually got back her driving license just one day before the couple brought Ben to the doctor for the first time.
"It's a cliché, but you have to do it, because you have to live and do your best," said Mark.
The Gate City Bank for the Mercks will have a fund called Benefit of Ben Merck.