15-Year-Old West Fargo Boy Battling ALS Isn’t Giving Up
According to the CDC, less than 1 percent of those diagnosed with ALS are under the age of 40
WEST FARGO, N.D. — Step into 15–year–old Ben Merck’s bedroom, and you’ll see he’s not much different from other teenagers.
Sports caps, sneakers and posters of his favorite athletes, fill the walls.
But his struggle with a neurological disorder isn’t one many kids his age are familiar with.
“Doctors have said, you know, ‘I didn’t believe it when I saw the diagnosis that a child would have this disease,'” says Ben’s father Mark Merck.
Ben spent this summer in and out of hospitals.
In October, a Mayo Clinic doctor finally diagnosed him with what his father says has been the family’s worst nightmare.
“The doctor was confident that it was a form of ALS.”
ALS, also known as Lou Gehrig’s disease, affects a person’s nervous system, causing muscle weakness and making it difficult to breathe, walk and talk.
ALS is so rare in kids Ben’s age that the CDC has only counted a handful.
Mark says time is not on their side, but with the help of the Make–A–Wish Foundation, Ben was recently able to check one thing off his bucket list.
“His wish was to go see NBA superstar James Harden, the rockets, Houston Rockets. So, we got to go down to Houston and sit and watch them practice and meet all the players, which is amazing.”
Although Ben’s condition is progressing incredibly quickly, there is still hope.
An experimental drug treatment that could help him is in the process of getting FDA–approved.
“It’s something that gives you some hope, that we can at least slow this progression down and see some improvement,” says Mark.
Because it’s an experimental drug, insurance won’t cover the cost.
A GoFundMe page for the Merck’s is up and running.
The family hopes this treatment is what will help Ben win this battle.
You can donate through this link: Support Ben Merck.