WEST FARGO — A Sheyenne High School sophomore diagnosed with ALS a month ago has died.

Ben Merck, who turned 16 last week, was hospitalized with complications from the neuromuscular disease Monday, Nov. 25. His father, Mark Merck, posted to Facebook on Tuesday, Nov. 26, that Ben had passed away that morning. He died at Sanford Medical Center in Fargo.

Ben's funeral will be held at 10 a.m. Wednesday, Dec. 4, at Lutheran Church of the Cross in West Fargo. Visitation will be from 5-7 p.m. Tuesday, Dec. 3, with a prayer service at 7 p.m. at the church.

"We know many are grieving this loss with us, but we don’t feel despair. We know Ben’s suffering has ended and he is going on to a beautiful place with his Lord and God," Mark wrote.

Ben Merck began struggling with neuromuscular symptoms such as slurred speech, labored breathing and muscle weakness in 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.

WDAY logo
listen live
watch live

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. 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.

Earlier this month, the director of the Eleanor and Lou Gehrig ALS Center at Columbia University in New York City had contacted the Merck family hoping to get Ben on an experimental treatment that had shown some promising results in ALS patients.

Mark and Linda Merck have extended their thanks many times to the community that has pulled together for their son.

Mark Merck and his son, Ben, recently experienced a Make-A-Wish trip to Houston to meet NBA star James Harden. 
David Samson / The Pioneer
Mark Merck and his son, Ben, recently experienced a Make-A-Wish trip to Houston to meet NBA star James Harden. David Samson / The Pioneer

"We would like to thank the community for all the love and support they’ve shown to us during Ben’s fight with ALS," Mark wrote on Facebook. "Thank you so much to his Sheyenne High School family. Your support has given us so much comfort. Thank you to all the people in this wonderful community who have cared and prayed for Ben. We will gather soon to celebrate his life. In the meantime Linda and I will grieve peacefully as a family."

A message was sent to Sheyenne High School parents Tuesday morning notifying them of Ben's condition.

"Ben is a well-known and much-loved sophomore at Sheyenne High School. While Ben has not yet passed away, doctors have determined there is no brain activity," the message said. "People will react to this news in their own way, and we need to be supportive of one another. Some may not have known Ben very well and may not be as affected, while others may experience a great deal of sadness. Everyone at Sheyenne wants you and your student to know that we are here to help you in any way we can. "

RELATED

District officials said counselors will be available for students and staff.

The National Association of School Psychologists was noted as a resource to help students and parents through the grieving process.