Mom of 2 Who Had Hands and Feet Amputated After Rare Blood Infection Talks Recovery
"We're putting back the pieces one by one," Ilysa Winick tells PEOPLE
On July 13, 2016, Ilysa Winick was living the life she had both dreamed of and worked so hard to get. The mom of two and entrepreneur had just spent the previous weekend celebrating her 42nd birthday and was looking forward to an upcoming family vacation.
“It was a really full life, and I think we were cognizant of that then and had perspective on that,” Ilysa tells PEOPLE. “We were just a happy, young family.”
But around 2 p.m. on that summer day, Ilysa — who had woken up feeling achy and tired at her New York City apartment — started to feel like “my hands and feet were on fire,” she says, adding that she couldn’t walk and was in excruciating pain.
After her husband Steve rushed her to the hospital, things for the Winick family would never be the same. At the emergency room, tests revealed that she had a near-fatal blood infection. Doctors immediately put her in a medically induced coma.
“There are no words to describe that feeling when someone that you love, all of a sudden, is taken,” says Steve, 44. “It’s not even on the radar. You’re not at that part of your life. You’re not thinking about that, and all of a sudden, it’s like she might never get out of here? Where did this come from?”
Over the two next weeks, Steve had to make decisions that he never fathomed would ever come up in his lifetime. Ilysa’s condition eventually led to the amputation of her feet and hands, and left her in desperate need of a new kidney. The frightening infection, which doctors still don’t know how she contracted, caused her body to go into septic shock, shutting down all of her vital organs.
She could only do so much on dialysis, a grueling five-day-a week process she had to endure until she had a kidney transplant. She tried to rebuild her life and relearned how to do everything from eat and walk with the help of her state-of-the-art prosthetics.
“It eats up all of your time,” she says. “It makes you tired and sick.”
Adds Steve: “Learning this new life, and even just navigating her through the hospital was an enormous task.”
A Life-Saving Gift
Over the next three months, Ilysa was at Columbia Presbyterian hospital with family and friends by her side. The devoted mom, who says she’s always been a “very type A” and “fiercely independent woman,” had to learn to be vulnerable and comfortable leaning on those closest to her.
“I never had a day where I was alone,” she recalls. “There were always girlfriends around. It was really unbelievable and surreal to watch.”
To read more about Ilysa and Catriona’s story, pick up the latest issue of PEOPLE, on newsstands Friday.
After going home to her family’s 2-bedroom home in Manhattan in September 2016, “the real work began,” says Steve. As Ilysa tried to get back to work at Reade Street Prep, a private school she founded with her husband in 2010, she was still in need of dialysis, which she calls “a life support machine.”
And after months of waiting for a kidney transplant, she got the call she had been desperately waiting for — a kidney donor had come through. PEOPLE photo director Catriona Ni Aolain, who was touched by Ilysa’s story when she heard about it at work, found out she was a perfect match and on August 9, 2017, they underwent the successful transplant surgery. The two are now close friends and text daily.
A Second Chance
After the surgery, Ilysa was immediately taken off dialysis and regained her independence.
“It’s the most unselfish type of gift you can give someone,” Ilysa says about Catriona. “It also signaled to me that despite everything I lost, somebody thought my life was still worth saving.”
It also adds to her determination to get stronger and set an example for her children — Benjamin, 8, and Ryan, 5.
Steve says the progress his wife has made has been “amazing,” and he can see how driven she is to even do small things — like walk their sons to school in the morning. Along with endless hours of physical and occupational therapy, she’s becoming more confident to take on the things that used to be second nature for her.
“She’s fighting every day and it’s really touching to watch,” he says. “It’s amazing for our kids to just observe.”
While she’s still “learning how to see and navigate the world completely differently from anything I had ever done,” she says, Ilysa is now back at her school’s two locations in TriBeCa, goes to Crossfit and spends time with her friends. She also makes sure to hold onto her kids tighter and hopes that other people do the same after hearing her story.
“I’m very fortunate to have a husband and have people in my life who really care about me, have helped take care of me and helped sustain me through this journey,” she says. “I think the perspective — which to some extent I had but certainly not to the extent I do now — is that life changes in an instant and you can’t prepare for it. So the best thing you can do is live in the moment but be cognizant of good health and good fortune.”
Ilysa’s entire community stepped up to help the family with everything from fundraising after their medical bills topped more than a million dollars to dropping off cooked meals and flowers. Ilysa’s sister, whom she calls her “best friend in the entire world,” has also been one of the main people who “helped save my life,” she says.
This winter, she hopes to get back on skiis, wants to start traveling again and plans to expand their school in the future.
“I want to just take time, spend it with my family and really appreciate it,” she says. “I want to hold onto these years with the kids, because they’re getting big so quick and they’re both the most important people in my life. They’re so special to me. That’s where my heart is. It’s a fragment of life and we’re putting back the pieces one by one.”