An Illinois couple is celebrating becoming newlyweds three years after the bride developed a rare disease that threatened to end her life.
Viktoria Cupay, 26, opened up about her personal journey in a TikTok video that has since been viewed more than 2 million times. She told "Good Morning America" she wanted to open up about her extraordinary recovery on social media to both inspire and raise awareness about the rare disease she had.
Cupay said she had been diagnosed with lupus, an autoimmune disease, in 2016 after experiencing symptoms for two years, but it wasn't until June 2019 when she said "everything went downhill."
"My mom brought me to the emergency room because I had a fever but we were just thinking it was just another lupus flare-up," Cupay recalled.
It turned out to be unrelated. "I started developing blisters, and that's when the doctors diagnosed me with Stevens-Johnson Syndrome or toxic epidermal necrolysis," she said.
Stevens-Johnson syndrome, or SJS, and toxic epidermal necrolysis are severe diseases where skin tissue starts to die and detach from the body. Toxic epidermal necrolysis, or TEN, is considered a more severe form of SJS.
Symptoms of SJS and TEN may include fever, body aches, other flu-like symptoms, and red or purple rashes that can blister, peel, and turn painful. These rare diseases affect fewer than 5,000 people in the U.S. and all cases of SJS/TEN are considered medical emergencies, according to the National Institutes of Health.
For Cupay, doctors told her she likely developed SJS/TEN as a result of an allergic reaction to a medication. Shortly after she arrived at the hospital, she was transferred to the intensive care unit.
"I was considered like a burn victim," Cupay said. "They put me in a burn ICU because my injuries were so severe, and that's when they had to put me in a medically induced coma."
Cupay would remain in a coma for a month and had to get three surgeries, including a tracheostomy to help her breathe and surgery for a gastrostomy tube to help her eat. Overall, Cupay stayed in the hospital for 240 days, a long, painful journey that she said she couldn't have done without the support of both her family and her then-boyfriend Nick Baldo.
"I was 23 at that time. At that age, you would think that you would be living your best life but no, I was learning how to walk and talk and eat again," Cupay said. "There were moments where I just wanted to give up. But I had the best support system and I owe them my recovery."
While Cupay was in a coma, she said Baldo, who had been living and working in San Francisco, decided to return home to Illinois and ask Cupay's mother for her blessing to propose. After Cupay regained consciousness, Baldo asked her to marry him.
"It was just my mom and Nick and the musical therapist at the time," Cupay recounted. "I was just surprised because at that time, when I woke up from a coma, they handed me a mirror because I didn't know what was going on. And so when I looked at myself, I didn't look like me. I lost so much weight already. My skin looked different because it fell off pretty much ... I did not look like myself at all."
Still, she said, "he chose to stay with me. He chose to spend the rest of his life with me."
MORE: Couple marries after groom receives terminal cancer diagnosisOn Aug. 19, three years after their hospital engagement, Cupay and Baldo finally married.
"We chose the date for a reason because we wanted to look back on that day with pure happiness from now on," Cupay said. "I was just happy -- happy and grateful, is all I could say because three years ago, we wouldn't have thought of this becoming a reality."
"I'm happy again that I'm able to live a second life, celebrate love, celebrate our recovery, second chances and the love of my family," she added.
Today, Cupay has recovered from SJS/TEN but still lives with lupus, a chronic condition that has no cure, according to the Centers for Disease Control and Prevention. Her experience has motivated her to become an advocate and speak out about both SJS/TEN and lupus.
"Looking back at it, it's crazy how far I've come. I'm in awe as well," Cupay said. "That's why I want to share my story because I have been there, I have been at the lowest point in my life and I'm hoping that when someone hears this story, that it might be the story that they needed to hear to keep going as well."
