Dani Hansen has repeated the same phrase over and over, thousands of times, in her head:
“I want to be like a sunflower so that even on my darkest days I will stand tall and find the light.“
Over six years and nearly a dozen eye surgeries, the mantra has kept her going. She never gave up hope of seeing her children. Her eye surgeons at UW Health fought in partnership with her to achieve that quest.
In late December 2018, Dani came home from work with what seemed like a common cold. A couple of hours later, her fever spiked, and blisters started forming on her skin.
Over the next few hours, her condition worsened, and her fiancé rushed her to the hospital. She was transferred to Madison’s University Hospital, where she was eventually diagnosed with Steven Johnson Syndrome (SJS), a rare, debilitating, and potentially life-threatening disorder of the skin and mucous membranes. While the exact cause of Dani’s case isn’t known, SJS is typically the result of an adverse reaction to a medication.
The effects were devastating. Dani was placed in critical condition, with extreme burns all over her body. She was given a 25% chance of survival.
“I was in the burn unit for 44 days, including Christmas and my birthday,” Dani recalls. “I was intubated for 15 days. I lost 75% of my skin, along with all my hair and fingernails.”
In addition to severe blistering and burning, Dani also experienced swelling in her mouth, throat, and face, as well as extensive scarring on her eyelids and corneas.
Dani’s mother, Bev Stagman, is a registered nurse with three decades of experience in the operating room, specializing in trauma surgeries. “My training gave me the strength to do what I needed to do to help Danielle,” she said. “I immediately realized how severe her condition was, even as a person who had never seen or heard of SJS before.”
When Dani finally returned home in February 2019, hidden behind dark sunglasses, she was highly sensitive to light, and nearly blind in her left eye.
Her first course of action was to visit an eye care provider in her hometown of La Crosse, Wis. The plan was to improve Dani’s vision by fitting her right eye for a scleral lens -a custom-fit, large, rigid contact lens. But the scarring in and around her eye made that impossible.
Her doctor recommended Dani undergo plastic surgery to fix the scarring on her eyelid. With a bit of research and the recommendation of a friend and fellow SJS survivor, Dani contacted Cat Burkat, MD, an oculoplastic surgeon at UW Health in Madison, Wis. for help.
In August 2019, Dani underwent the first of what would be a series of surgeries to cover the scarring and repair her eyelid so the lens would be more comfortable.
Through early 2020, Dani continued to work with her local eye care provider. But, despite all they had done, they were unable to get the lens to fit well. Her doctor recommended she receive a stem cell transplant to heal the fragile cornea.
Extensive research led Dani that spring to Sarah Nehls, MD, a cornea specialist at UW Health in Madison.
“Dr. Nehls had experience in treating ocular damage from SJS,” Dani said. “And I immediately liked her. I knew she was the right fit for me, and we were able to work together to set up a treatment plan.”
“Dani had multiple amniotic membrane transplants while hospitalized in the burn ward at University Hospital,” said Dr. Nehls. “Due to the severity of the Stevens Johnson Syndrome, the placental grafts helped but were not able to prevent ocular surface scar tissue from forming. Dani persevered through the life and vision threatening condition with her family at her side, also supported by the nurses, burn doctors and ophthalmology team that were working to support her care. She maintained a strong outlook and upon discharge from the hospital, started down the path of work to restore vision.”
But soon enough, the trouble started.
“I got a bacterial infection in my right eye,” Dani explained. “The cornea perforated, and I needed emergency surgery. Dr. Nehls was able to get the eye stable temporarily, but there were a lot of ups and downs along the way. We decided, then, to switch our treatment to focus on my left eye.”
In March 2021, Dr. Nehls performed a stem cell transplant on Dani’s left eye, utilizing tissue donated by Dani’s sister to patch the damaged cornea.
“It was an incredible gift from Dani’s sister, Amanda, to provide the living stem cells from one of her eyes to help her sister see,” said Dr. Nehls. “Through blood tests Amanda was found to have the closest DNA tissue match to Dani, although other family members were willing and ready to donate.“
Once her eye was healed from the surgery, Dani saw Amy Walker, OD, an optometrist at UW Health, to have that left eye fitted with scleral lens.
Her vision improved – for a time. But, as she took one step forward, she took another backwards.
Dani developed a cataract in her left eye. By the time she got married in October 2021, she was – again – blind.
One month later, Dani had the cataract removed, and things were on a good path. Her vision was clear. She returned to work in 2022 and even celebrated the birth of her first child, Clay, later that year.
But things changed – again – when Dani became pregnant with her second child, Aubrie, in 2023.
“My pregnancy was hard on the stem cell transplant,” Dani said. “And my body ended up rejecting it. Eventually, the cornea in my left eye perforated.”
The next months were a continuous cycle of perforations and repairs. Despite everything, Dani’s vision worsened, and by the time Aubrie was born in February 2024, Dani was once again blind.
Dr. Nehls and the team at UW Health refused to give up. After extensive research, they uncovered a revolutionary procedure that was being conducted successfully in Europe. In May 2024, Dr. Nehls performed a second stem cell transplant on Dani’s left eye, this time with cells from the inside of Dani’s own cheek.
“The mucosal tissue harvested from Dani’s mouth, two months after Aubrie was born, was transplanted to her left eye,” explained Dr. Nehls. “It was a team approach by me and Dr. Burkat. We were hopeful this would bandage the surface of Dani’s left eye so she could then have a corneal transplant to restore her vision. Dani knew it would take several months before a transplant could be attempted and was patient with the healing process while caring for her newborn daughter.”
Over the next few months, the surgery held, and Dani’s eye continued to improve. By September 2024, Dr. Nehls was able to do a cornea transplant utilizing a prosthetic cornea.
“We assembled a team for Dani’s recent surgery to provide the best possible result,” Dr. Nehls said. “Dani’s eye needed a complex three-surgeon procedure to successfully transplant a new prosthetic cornea, called a keratoprosthesis, to allow for restoration of her vision.” In addition to Dr. Nehls, that surgical team included glaucoma specialist Yao Liu, MD and retina specialist Amol Kulkarni, MD.
The results have been life changing.
“My vision is the clearest it’s ever been,” Dani said. “I never got to see my daughter until this cornea transplant. I knew her but didn’t truly know her. It was incredible. I got to experience having a new baby all over again.”
“It’s been a journey for my son too,” Dani continued. “He’s so used to me not being able to see. He grew up helping me find things on the floor and helping me put on my shoes. Now that I can see, it’s all about ‘can you see me mommy?’ Now I can. I had told Sarah that was what I wanted. I didn’t need to drive again or anything else. I just wanted to see my children and play with them. And I got that.”
“Being a mom, I am so grateful to the UW surgeons for what they have done to help Dani see so she can be the mom she wants to be,” added Bev. “I appreciate that they understand the importance of seeing your children. They are more like family and friends than just doctors. I can’t thank them enough. They gave me my daughter back.”
Dani credits her surgical team at UW Health for refusing to let her give up, no matter how difficult things became.
“Thank you isn’t enough for everything they’ve done for me,” she said. “It wasn’t just doing the basic medical care that they do every day. It was being there to comfort me – and not giving up on me or giving up hope. They helped me keep on fighting.”