The Story Behind Jaden Ellman's Elevator Pass
Jaden Ellman smiles, pauses, smiles again, and says, “So...CMT is...um…huh. It’s kinda hard to explain. I always feel like I’m...I...well. I don’t do the best job whenever people ask me that question.” It’s apparent he’s been asked this quite a few times.
You probably have no clue what CMT is. At least, I sure didn’t. Jaden, a senior at Galloway, has a rare neurogenetic condition called Charcot-Marie-Tooth disease (CMT) His disease, in his own words, is basically a genetic disorder that makes it so the brain has a hard time sending and receiving signals from the nerves in his muscles. However, CMT is actually a very large umbrella term for all different kinds of neuromuscular diseases. Jaden happens to have CMT Type 1E that only affects a couple thousand people on Earth.
As a classmate of Jaden’s, I know his disease could not define him less. For those of you who don’t know Jaden well, he wears many hats: a drummer, a music producer, a rapper, a journalist, a film-maker, and a traveler.
Shockingly, though, Jaden was only diagnosed with CMT a little over a year ago, even though he has always had symptoms. When he was little, he was virtually “diagnosed with being undiagnosed”, in his own words, meaning that the doctors knew there was a problem with his muscles, but could not pinpoint exactly what.
Jaden (center) with Isak Wall (left) and Tillman Minter (right)
It wasn’t until a spinal surgery about four years ago that a surgical technician noticed difficulty getting a signal from his nerves. After the surgery, he began actively visiting more specialists and doctors, eventually leading him to the National Institute of Health in Maryland. There, Jaden spent a laborious two whole days doing virtually every medical test under the sun to figure out what exactly he had. A couple months later, he got his diagnosis, and the mystery was solved.
“It’s weird,” Jaden recalls. “All of a sudden, I had this name to associate with what I had been experiencing for years.” Post-diagnosis, Jaden understandably felt a mix of emotions. After seeing the same neurologist for several years and switching to another, it was irritating to see how quickly the new doctor figured out his disease.
“Once we saw the different neurologist, whatever I was having seemed so obvious,” he explains. “I could have been diagnosed much earlier, so that was pretty frustrating.”
In the midst of frustration and coming to terms with his diagnosis, Jaden fell into contact with CMTA, the Charcot-Marie-Tooth Association. By being in “the right place at the right time”, as Jaden says, he secured a spot on the brand new CMTA Youth Council along with eight other teens.
“It’s been really rewarding, not only to meet other people who’ve experienced similar things, but [it’s] really motivated [me] to join this community and give back to it,” he details. “The whole goal of the board is to empower other youth with the disease, and that is really meaningful to me.”
With the group, Jaden traveled to Denver for a retreat over the summer and participates in regular conference calls over the phone as well. The relationships he’s made through CMTA, he says, “have been absolutely priceless.”
“For me personally, just having people to go to that really truly understand [what I go through] has made such a difference,” Jaden says.
As time goes on, Jaden definitely plans to stay involved with the organization and continue to give back to the CMT community. Since it has given him so much, he wants to share that with others.
“It’s crazy to look back and think a year and a half ago, all of this was completely foreign to me. I feel like now I have a much clearer direction moving forward.” There’s certainly no doubt that Jaden has a promising future ahead of him, and as his classmate and peer, I greatly look forward to seeing what he accomplishes.
By Annie Levy