A Journey of Hope: One high school graduate’s path to college, despite her diagnosis
NEW ORLEANS (WVUE) - Ariyana Marcel spent only a few moments on stage at the Covington High graduation, but in that instant, a dream 18-years in the making, was realized.
“I’m really excited,” Marcel said. “I’m excited to become an adult now and just kind of move on to this next chapter in my life and go to college.”
That next chapter, for some, may have seemed far from reality years ago.
“I think saying that she wouldn’t do certain things would be kind of like to prepare us for what to expect,” Mary Lynn Dillon, Aryiana’s mother, said.
Dillon never doubted her daughter and the great things she could achieve, even after she learned her little girl has spinal muscular atrophy.
“I can remember the day she got diagnosed even as devastating as it was it was really back and forth. One of the first things, my very first rule was there is no ‘can’t’,” Dillon said.
Dillon is her daughter’s biggest cheerleader, so it’s no wonder she was so optimistic about what her daughter could accomplish, but the reality is spinal muscular atrophy, or SMA, robs patients of their movements, withering their muscles, and minimizing motion as they get older.
We first met Marcel in 2018, when she was a freshman at Covington High, right after she started her first treatment of Spinraza, a groundbreaking medicine in the fight against SMA.
“I was losing the ability to do things very quickly before Spinraza,” Marcel said.
A healthy person has two genes that make the proteins needed to fuel motor neurons that make muscles work, but in patients with SMA, the first gene is damaged, so they must rely on the second gene, which can’t produce enough protein to keep the motor neurons alive. As those neurons die, the muscles atrophy, or waste away, preventing movement. But Spinraza tricks the second gene into making more protein, which keeps the motor neurons alive and the muscles working, giving patients like Marcel more control of their body.
“It’s hard to take it all in what’s happening to her because it’s these moments that catch you off guard,” Dillon said. “It’s like she doesn’t even have to think, ‘Oh, I’m going to do this thing that I couldn’t do before,’ and just reaches up on the counter and so as you see these things happen you realize we have these moments where I’m just like, ‘Did you just do that? Do it again!”
“A lot of things that wouldn’t have been a possibility before it would have just been getting worse,” Marcel said. “But now we don’t have to worry about getting worse, it’s just getting better or staying the same, but I’ve been getting better. I’m able to do things like brush my hair or help clothing myself.”
That’s huge because starting in the fall Marcel is going to college, enrolled at the University of Louisiana at Lafayette, she’ll be living on campus on her own.
“I’m very nervous for sure,” Marcel said.
“I always knew it was going to happen and I never really have been so happy and excited and proud and completely heartbroken at the same time. She’s my best friend,” Dillon said.
Despite her diagnosis, Dillon always knew her daughter would find her path to college, in fact, she’s the first in her family to do it.
“I think probably since I knew what college was going to be I was like, ‘I’m going to go to college!’ I’ve never really not thought I was going to go to college, that’s always been my goal,” Marcel said.
But as she prepares to move out next semester, Marcel’s mother is saying goodbye to more than a daughter, more like a friend, who has been with her every step of their journey.
“The sleepless nights, all the things that have happened over 18 years, and there she is walking across the stage. I get flashbacks, all those moments in that little girl and there she is a woman going out into the world and achieving all these things that I never achieved and excelling at everything she does and just knowing my heart is filled with so much pride,” Dillon said.
It’s that pride that fuels Marcel, now planning on becoming a veterinarian, she’s determined to prove any remaining doubters wrong.
“I was a cheerleader, I’ve done horse shows, so like I feel like college is one of those things just people don’t really expect it and I just kind of like to prove people wrong. So it’s like when they say you won’t do this, it just makes me want to do it more,” Marcel said.
With Spinraza keeping her strong and a family that’s fiercely proud, Dillon knows her daughter will achieve anything she sets her mind to, even if others aren’t used to seeing someone like her, achieve so much.
“Whether she’s in a princess dress spinning around or if she’s at my wedding as my maid of honor dancing with us, it doesn’t matter, it’s beautiful either way, our journey just looks a little different,” Dillon said.
You can follow Ariyana Marcel’s journey on her Facebook page.
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