'My body was already broken': Widow and mom of 2 young kids battles rare disease
This is how adventurous Danica and Matt Romeyn were as a team: They got married at dawn on Sept. 26, 2014 – atop a volcano.
That was back when every day seemed to hold sky-high possibilities for the young, outdoors-loving couple who met in California while working for the National Park Service. Whose lives, after their 10,500-foot-high ceremony on Mt. Lassen in Lassen Volcanic National Park, centered on love and shared goals.
She was an archaeologist. He became a astrobotanist for NASA. They named their two children Everest and Rhone — son Everest, now 6, for the "ultimate adventure in the world" and daughter Rhone, now 4, for the valley in France, one of the stops on their honeymoon.
Now, Danica is fighting for her life, without Matt by her side.
Around four years ago, the Merritt Island, Florida, resident was diagnosed with scleroderma, which, as defined by Mayo Clinic, is a group of rare diseases that involve the hardening and tightening of the skin. Scleroderma, for which there's no cure, can cause problems in the blood vessels, internal organs and digestive tract, and is the most fatal of all rheumatologic diseases, according to University of Michigan Health. Danica has exhausted all the medications used to treat the autoimmune disease and her illness has progressed to a point where she cannot drive "or even wash my own hair," she told Florida Today, which is part of the USA TODAY Network.
Then, on Aug. 16, 2022, Matt was killed in a car accident on Merritt Island, on his way to work after dropping Rhone off at school. Another driver ran a red light and hit Matt's car. Matt died at the scene. He was 38. The other driver, a repeat offender, was later fined $1,000.
"I guess I never understood when people talked about the physical aspect of heartbreak," said Danica.
"But it hurts physically. It hurts emotionally ... you're broken. My body was already broken but then to break my spirit ... Matt was my partner. The love of my life. We adventured together; were raising a family together. We dreamed together ... you not only lose your partner, you lose your dreams."
And today, the 40-year-old mom's health has worsened to a point where she needs a bone marrow stem cell transplant, one not available in the United States and which will cost upwards of $50,000 for the transplant alone. She's undergoing chemotherapy to slow the disease's progression and prepping for surgery on her right hand, on which she's already lost a finger due to circulation loss. She describes it as "like a claw."
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"My parents moved down here a few years ago, but they have become year-round residents since Matt was killed. I literally couldn't do this without them," she said. "We are hoping that with a bone marrow transplant, I'll become strong enough to carry on life without full-time support, but until then, they are committed to our family."
Looking back, Danica tells the kind of meet-cute story you'd see in a rom-com, one about people who geeked out over shared interests; who were just friends when on Feb. 14, 2013, they decided to attend a "Singles Awareness Day" event together — and wound up falling in love.
"We'd sit on a porch and drink our coffee, and talk about how to change the way we travel in space," said Danica.
"He was going to change the world, you know, in all the little ways that we can. People don't think about all that kind of stuff on a regular basis, but that's where his mind was. And it was just amazing."
Life's changes, challenges
They looked to nature for inspiration, from kayaking and hiking to contemplating the future far beyond Earth.
The Romeyns, Michigan natives, moved to Merritt Island from California in 2016 for Matt's job in NASA’s Kennedy Space Center for Exploration Research and Technology Programs’ Utilization and Life Sciences Office.
He — a decorated Marine veteran who'd suffered a traumatic brain injury from an IED in Iraq — was a principal investigator for NASA's Plant Habitat-04 experiment, through which, for the first time, astronauts grew peppers aboard the International Space Station.
Danica was pregnant with their first child when they moved. There were health issues with both children upon their births that made motherhood anything but easy: "I really wanted to get back to work with the national parks but after having my kids, then I got sick," she said.
A cadre of close friends has started a GoFundMe campaign, which to date has brought in more than $55,000. It's the least they can do, they said, for Danica, whom Lisa Harden of Redding, Calif., describes as "warm, funny, social, and always willing to reach out and share her heart and her home."
Matt and Danica had "been through their fair share of challenges over the years, even prior to Danica’s diagnosis," said Kaitlin Gillespie, who met the Romeyns when they lived in Redding.
Matt did everything for Danica and their children as her condition worsened, and was the family's sole provider of income and health insurance, Gillespie said.
"But even in the face of adversity, they always had love to share with everyone around them," she said.
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"Danica and Matt touched my life in immeasurable ways ... For me, that’s what’s behind this fundraiser — the hope that all of us who know her will be able to return some of what she’s given us over the years."
The same goes for Megan Conn, another friend from the couple's California years.
"Anyone who has had to navigate the medical, insurance, or justice systems knows how frustrating they can be. Having to deal with them all at once, compounded with grief, motherhood and illness is unbearable," Conn said.
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"Unfortunately, these safety nets have failed Danica and we (Danica’s friends) have felt helpless ... It was important to us that we shower her with love in the month of February as their first date was Valentine's Day."
'It is just an amazing story'
Engineering plant scientist Jacob Torres, employed with a Kennedy Space Center contractor, worked with Matt on the pepper project.
He and some of Matt's colleagues used to gather at Matt's desk, where coffee brewed and conversation about big ideas came to life. Matt's desk is still there. So is his legacy, Torres said.
Torres worries about Danica and the children, about the loss of Matt's income and the monumental bills in Danica's fight for her life and future.
"One of the things that I really think about is that Matt went to war. He's a war hero, with Purple Hearts," said Torres.
"He went through all that in Iraq to come home and die that way .. that was just really rough. Danica and Matt were just normal people, kids who worked in a national park. You know what I mean? They came out here on a whim and then he accomplished everything he did ... it is just an amazing story."
Danica is grateful for everyone who's reached out to be part of her mission to live and raise her children.
This fiercely devoted mom encourages Everest and Rhone to share their memories. They look at family photos and tell stories. Instead of "random acts of kindness," she said, she encourages "intentional acts," daily, like taking the children to pet cats in shelters, or doing a good deed for a neighbor.
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She also seeks to bring awareness to reckless driving: The man who ran the red light and caused the accident that killed Matt got a six-month license suspension in addition to the fine. It's not enough, Danica said.
"He was a repeat offender," she said.
"He was thinking of himself when he went through that red light, not thinking about anyone else, and he destroyed our lives. We're trying to repair our hearts from that. I wish there was a way to just shut it down. But every day we just try to fight through it ... do kind things that fill our hearts with all the joy we can. I tell them sometimes our hearts get black with sadness or anger, but we want our hearts to be full of beautiful colors and kindness."
She wants Everest and Rhone to grow up knowing how loved and important they are; what a big part of their parents' story they remain.
"Life is a romantic adventure," she said.
"And there's so much to be inspired by. We're trying to get back to that. I have to get back to that ... every day, I'm trying to get a little bit better. Especially since my husband's gone, I've got to fight harder."
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Britt Kennerly is education/breaking news editor at FLORIDA TODAY. Contact Kennerly at 321-917-4744 or bkennerly@floridatoday.com. Twitter: @bybrittkennerly Facebook: /bybrittkennerly.
This article originally appeared on USA TODAY: Florida mom with scleroderma awaits transplant months after husband dies
