WEST FARGO — The family of 15-year-old Ben Merck, who was diagnosed with amyotrophic lateral sclerosis (ALS) in October, received a phone call last week that offered a glimmer of hope for the teenager whose condition is progressing rapidly.
Merck, a sophomore at West Fargo Sheyenne High School, had been struggling with neuromuscular symptoms such as slurred speech, labored breathing and muscle weakness since May.
After five months of doctors searching to determine his condition, Ben was diagnosed with ALS Oct. 22 at the Mayo Clinic in Rochester, Minn. Weeks later, the disease was confirmed through genetic testing.
ALS, also known as Lou Gehrig’s disease, 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. With ALS, the symptoms don’t improve; they worsen.
The Mercks had read about experimental treatments since they sat in the hospital room with a neurologist and social worker in October. They hoped something like that would be possible for Ben but were unsure.
Well my mom just told me that the test for ALS came back positive so I do have it and I am gonna pass away form it ya I know it’s sad but I’m not worried about that I just wanna live my life the happiest I can and give it a full send I love all y’all to death
Well my mom just told me that the test for ALS came back positive so I do have it and I am gonna pass away form it ya I know it’s sad but I’m not worried about that I just wanna live my life the happiest I can and give it a full send I love all y’all to death— Ben Merck (@MerckBen) November 2, 2019
Until last week, when Ben’s father Mark Merck answered a call from Dr. Neil Shneider, the director of the Eleanor and Lou Gehrig ALS Center at Columbia University in New York City.
Shneider developed a drug that has shown some promising results in ALS patients, and he wants to get Ben on the experimental treatment. Shneider was given Mark's phone number by the mother of twins who were also diagnosed with a type of ALS similar to Ben's. One is currently undergoing Shneider’s experimental treatment.
Alex Hermstad of Spencer, Iowa, died in 2011 at age 17 after living with ALS for six years. Her identical twin sister, Jaci Hermstad, didn’t show any signs or symptoms of the disease when her sister passed away. But now, at 22, Jaci is fighting the same disease that took her sister’s life. Shneider designed a treatment specifically for Jaci, who has the same genetic mutation as Ben. Jaci and Ben share the FUS P525L gene, which causes an aggressive form of juvenile ALS. The mutation scrambles the proteins in the body, and Shneider’s method blocks those proteins from damaging the motor neurons.
Mark said Jaci has shown more motion and mobility after undergoing the treatment for some time. At 15, Ben’s case is another rare one, Shneider said. It’s extremely uncommon for someone so young to be diagnosed with the disease, which usually develops in adults between the ages of 40 and 70.
After the half-hour phone call with Shneider, Mark and Linda Merck said they would be open to the treatment if Ben was approved. It’s trickier for juveniles to be approved for an experimental drug, but Shneider seemed to think it would happen, Mark said.
“I've read that the FDA wants to approve things,” Mark said. “They know that people don't have a lot of time.. You know that in these kinds of cases, time is of the essence.”
Because the treatment is experimental, insurance most likely won’t help at all. This would be an out-of-pocket expense for Mark and Linda.
A GoFundMe page was recently created online by Mark's sister to help defray medical bills and extra living costs for the Merck family. A fund is also set up at Gate City Bank for the Mercks and is labeled “Benefit of Ben Merck.”
Mark doesn’t know exactly what kind of financial hit his family may be facing, but the Hermstads have received about $345,000 in donations and still have a roughly estimated $450,000 to go to cover the treatment and FDA toxicity testing.
The funds raised will help ease the Mercks' financial load and help cover the cost of the drug to help Ben have a better quality of life.
Ideally, Ben would undergo the first few rounds of the treatment in New York. After, he may end up closer to home at the University of Minnesota with a colleague of Shneider’s.
Ben’s diagnosis was an added blow to an already tough year for the Merck family. Linda, Mark’s wife and Ben's mom, had a stroke earlier this year.
On top of the crippling medical bills the Merck family is faced with, another hefty expense is creeping upward, as they need to find a new home for the family.
The Merck family's split-level home has stairs up and down, and the expenses of putting in a chairlift and remodeling a bathroom aren’t feasible. Ben may soon not be able to climb stairs. A mobility specialist said the family probably needs to find different housing, a house or apartment that can accommodate a wheelchair and has a bathroom suitable for one.
“It’s pretty daunting,” Mark said of the looming financial strain.
Ben has had some rough days, where clearing his lungs and breathing has been difficult. His muscle weakness is increasingly more apparent. It’s a struggle some days, Mark said.
Though it’s been hard, they’ve had some good, happy days, he added.
“Ben’s got the right attitude,” Mark said. “He knows what he’s facing and he still wants to be independent and do things that a 15-year-old wants to do — go to football games. He’s still standing on the sidelines with the team. He went to a volleyball game last night. He hangs out with friends when he can.”
Ben still goes to school at Sheyenne, but they’ve shortened the days. Fatigue is an outcome of ALS.
Since he is with his son every day, it’s hard for Mark to say how things are progressing.
“I’m with him and I see he has trouble walking up the stairs. Is it worse than it was the day before or is it about the same? But, probably, somewhat worse,” he said.
There are also times when Ben gets frustrated.
“He has days where he (says), ‘Don't help me. I’m doing this by myself.’ Or ‘I want to be by myself.’ And that’s understandable; nobody wants their dad or mom taking care of them when you’re a 15-year-old,” Mark said. “You want to feel like you can do things for yourself.”
Ben’s story immediately touched the community. In its first day up, almost $2,500 had been raised on his GoFundMe page.
Ben’s high school, Sheyenne, has also come together a few times to raise funds. In the Mustangs’ final regular-season football game against Fargo South, fans raised over $3,000 for the Merck family in the "miracle minute" of silence during halftime. Both student sections also donned red in honor of Ben’s favorite team, the Houston Rockets.
Ben, a longtime teammate of many of the Mustangs, has been on Sheyenne's sidelines this season supporting his other favorite team.
Every year, the Mustangs football team serves breakfast at the VFW for a cause. The Sunday, Oct. 6, event benefited Ben. The volleyball team also did a fundraiser and are going to be presenting the check to the Mercks soon.
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.
How you can help
Gate City Bank fund: A fund is also set up at Gate City Bank for the Mercks and is labeled “Benefit of Ben Merck”
Donate to the GoFundMe page for Ben here