Miracle worker: Gator Nurse uses novel treatment to give children a second chance

To double Gator Nurse and current Doctor of Nursing Practice, or DNP, student Kara Godwin, MSN, APRN, CPNP-PC, patient care means more than holding a hand at the bedside. Her dedication to her patients transforms lives, one child at a time.

Godwin (BSN 2009, MSN 2012) began her over two-decade-long career at UF Health Shands starting as a phlebotomist. After completing the Accelerated Bachelor of Science in Nursing program and then the Master of Science in Nursing program at the University of Florida College of Nursing, she eventually became a senior nurse practitioner on a heart-lung transplant team at UF Health Shands, where she helped provide children a second chance at life. But in 2015, Godwin’s career path changed when she decided to transition to the world of caring for pediatric patients with rare genetic disorders.

Barry Byrne, MD, distinguished clinician scientist and director of the University of Florida Powell Gene Therapy Center, knew Godwin from her stellar reputation at the hospital. As a pediatric cardiologist, he became aware of her work ethic during her time as a unit clerk and nurse on the pediatric inpatient unit and later as a heart transplant coordinator. Seeing her devotion as an asset, he invited her to join his team at the UF Health Center of Pediatric Neuromuscular and Rare Diseases, a collaborative, interdisciplinary care center founded to help develop new ways to care for patients with neuromuscular and rare disorders and connect patient with cutting-edge clinical research opportunities.

Since then, Godwin has been an integral part of running the outpatient interdisciplinary care center for children and adults with rare neuromuscular illnesses. Patients travel far to come to the care center and see multiple expert providers all on the same day.

“I knew I wanted to be part of something bigger than myself, and I knew the impact that this technology could have on patients,” Godwin said. “Looking back, it was more than I could have ever imagined.”

Many hats

As a nurse practitioner and care coordinator at the clinic, Godwin is responsible for arranging the operation of clinic sessions and organizes care for patients with spinal muscular atrophy, or SMA, and other disorders. Meeting with patients regularly, Godwin educates parents about their child’s condition, explains potential treatment options, such as gene therapy and provides families support through the entire process. She collaborates with the other providers caring for her patient, to develop a comprehensive individual care plan for each patient and sees it through. Within the institution, Godwin provides this type of “concierge medicine” through relationships she’s established over time with other departments to provide efficient coordination of care.

“Our role as nurse practitioners is crucial, we’re in the trenches helping families and the entire health care team navigate patient-centered care, and with a holistic approach to insights we can help support miracles,” Godwin said.

Godwin helped the clinic grow and now cares for 388 pediatric patients with various conditions. But to Godwin, her most rewarding role is the work she performs to make sure patients with SMA or other neuromuscular illnesses receive lifesaving treatment – without delay.

The leading genetic cause of infant death, SMA is a rare and deadly disorder that affects the ability to walk, eat and breathe. Caused by a missing gene at birth, infants with the disease will progressively loose motor neurons, or brain cells that control muscle movement, quickly.

 “We play an extremely important part in getting cutting-edge gene therapies to those in need, we identify how a SMA patient can be best helped and make it happen,” Godwin said. Every second that passes without treatment, that’s more motor neurons that are lost,” Godwin said. “That’s less of a chance that they will be able to lead a normal life.”

Healing hands

Since beginning work at the clinic, Godwin has been personally responsible for prescribing and securing insurance approval for new commercially-approved treatments for patients with rare diseases. Because of her efforts, the clinic was the first in the nation to treat pediatric patients with Exondys 51, Vyondys 53, and Amondys 45, all genetic therapy infusions to treat Duchenne’s muscular dystrophy, an inherited progressive muscle weakness typically found in boys.

In 2019, when the first-ever single-infusion, gene therapy treatment for SMA was approved by the Food and Drug Administration, she remembers the same day delivering a family a ray of hope for their daughter, Londyn, was just diagnosed. Thanks to a rapid diagnostic test that Godwin ordered, Londyn was found to be eligible to receive the new drug, Zolgensma.

Godwin’s patient advocacy knew no limits. Starting by contacting the family’s insurer directly, Godwin went as far as to contact a Florida senator’s office to make sure time was saved and that Londyn’s insurance plan was capable of approving the over $2 million medication.

“It all happened so fast,” Godwin said. “When we made the SMA diagnosis, we knew we were racing against the clock. We wanted to save her.”

Just one week later, Londyn became the first child in the nation to receive a Zolgesma infusion. Today, Godwin still feels the gratitude of a family that was made ‘whole’ again.

“I still see her regularly,” Godwin said. “I always get Mother’s Day photos, I get photos often letting me see how Londyn or my other patients are growing and living a normal life. It’s beyond rewarding to see all the hard work made a difference and it reminds me why I chose to become a nurse.”

To date, Godwin has helped provide this life-saving medication to 17 patients, with another child expected to receive Zolgensma later this month.

As a student in the College of Nursing’s DNP program, Godwin is expanding her clinical knowledge and leadership skills to further help the children and families who enter the clinic. Rene Love, PhD, DNP, PMHNP-BC, FNAP, FAANP, College of Nursing associate dean for academic affairs for graduate clinical education, said Godwin is not just advancing her own career by earning a DNP, but also bringing so much to the program as a current student.

“Kara is doing amazing work, “Love said. “She is a testament to how advanced nurse practitioners lead and work to change lives, as well as the perfect example of what it means to be a Gator Nurse.”

Bright future

Godwin has assumed a leadership role for the clinic – along with the wealth of responsibilities that come with it. She will graduate from the DNP program in fall 2022. She has a number of grant applications she is putting together on the side to secure outside funding and increase the clinic’s operation overall. Godwin hopes that the center will continue to expand its care offerings and soon have a psychological provider join the team. In just five years, the clinic’s patient base has grown nearly 300%, becoming a certified Muscular Dystrophy Association Care Center.

With her advanced degree, she will develop a long-term plan for the center while balancing her clinical duties. Her immediate goals are first to collaborate with the adult neuromuscular team to develop a transition clinic for young adults and next to become certified as a Duchenne Care Center by Parent Project for Muscular Dystrophy by the end of next summer.

“I dream that we will be recognized as the leading center for gene therapy within 5 years,” Godwin said. “If families can look to us and feel confident that their child could have a chance at a healthy life by visiting our clinic, my journey was completely worth it.”