Jenna Montgomery was just like any other North Dakota girl. She’s spent the past 10 years in Dickinson, where she fell in love.
Then, at 26 her health began a downward spiral.
But, Jenna’s story is really one of perseverance, and faith in what the future holds.
“So we’re pretty sure I’ve been experiencing symptoms my whole life. We just didn’t know what they were,” Jenna shared.
She did live a relatively normal life, until 2017 when she crashed during a night out with friends.
Her husband, Ben Montgomery described what happened with tears in his eyes, “We had a lot of fun, and then came home about 10:13 that night…she couldn’t get out of the wheelchair…she couldn’t get into bed.”
Ben and Jenna Montgomery met over 4 years ago, and have been inseparable since.
“We kind of counterproposed to one another,” Ben shared. “I don’t know how to describe that. Mostly it was just a quiet day, sitting on the couch watching a show. She kinda scoots in on the couch; she’s like ‘Hey, guess what’. I’m like ‘What?’ She’s like, “Wanna get married?’ I was like ‘Yeah, let’s get married’. I think that’s what I needed at that time.”
At 22-years-old, he never imagined taking care of someone, but he wouldn’t have it any other way.
“You never think something of this magnitude will just hit you, and then it does,” Ben explained.
After the September 2017 crash, a year-long journey followed, filled with seizure episodes, sometimes over 150 in a 3-day period.
“They tried to tell me it was in my head,” Jenna said.
Then, a doctor all the way in California was finally able to nail down a diagnosis: Hypermobile Ehlers Danlos Syndrome, and a cocktail of other linked diseases, including, Mast Cell Disease, Dysautonomia, and Myalgic Encephalomyelitis, among others.
Jenna explained how EDS works, “Normally tissue is like a rubber band, it stretches out and comes back. But when you have Ehlers Danlos Syndrome, it just stretches out and doesn’t come back a lot of the time.”
She’s referring to her connective tissue, like ligaments and tendons.
“I tried to push myself for a while when I first got sick. And it’s gotten to the point where even leaving the house for a 30-minute appointment once a week to get my port accessed is overwhelming. It triggers episodes of the seizure-like activity. It triggers a lot of pain, so most of my day is spent at home in bed,” she shared.
When you search Ehlers Danlos online, it’s labeled as rare, but Jenna says it’s really not as rare as you might think. It’s just hard to diagnose.
Ben says a world of difference would be made is money was put toward researching Myalgic Encephalomyelitis, or M.E.
“They just have no funding. There’s actually an estimate, that if they got the proper funding, they would have a cure for this in 10 years,” he added.
And, thanks to a surgery scheduled next month, Jenna has big hopes for the future.
“There’s this very special spot in Medora. It’s this trail with a bunch of stairs and it goes all the way up, and you can look all the way over the Badlands,” she described. “So I want to put on my wedding dress and my hiking boots and go up there and get remarried. I don’t know…that seems like the ultimate thing, that if we could just get past all of this, I could go do that.”
Jena is scheduled for neurosurgery in February. Because of the Ehlers Danlos, her neck and spine have become too weak to support her head, and the surgery will give her relief for many of her symptoms.
If you’re able to help the Montgomerys make their trip to New York and cover the medical costs, they have several ways to do so.