Connect Issues Winter 2021

Kate Jurgens is one of the founding board members of the Loeys-Dietz Syndrome Foundation and served on the board from its inception to 2014. Kate’s daughter, Mo, was diagnosed with a genetic marker in 2004 that would later be named Loeys- Dietz syndrome, Type 2. Mo, who was nine when diagnosed, is the only person among her three siblings and her parents to have LDS. Many surgeries (17 in 9 years) and therapies later, Mo finally had a diagnosis and her first of two open heart surgeries in 2005. Since diagnosis, she has endured 11 more surgeries and, like many people impacted by connective tissue disorders, remains under close and careful observation. In 2012, Kate published her book, Mo, a Loeys Dietz Syndrome Memoir, which includes forewords from Dr. Hal Dietz and Gretchen MacCarrick, MS, CGC. “Writing helped me to clear my head,” said Kate, who works as a nurse case manager in high-risk obstetrics, while she and her husband raise their four children. "Journaling has always been a big help to me. I wrote the book to help other families confronting their own medical mysteries or struggling with difficult health situations. I wrote it to help me become a better nurse. The book describes my three- pronged approach of medical mystery discovery in cooperation with medical staff, what it’s like to be a nurse and a mother of a chronically, sometimes KATE & MO

critically ill child while raising my other children, and how the experience remolded my Catholic faith.” Kate’s book is used in the Marquette University College of Nursing graduate nursing program, helping students explore family-centered care and communication. Kate and Mo find it very rewarding to discuss the book with students each semester and contribute to their nursing care for others. Mo, now 25, is currently three years into her own nursing career at her home away from home, Wisconsin Children’s Hospital, caring for infants through toddlers on a respiratory unit. Mo brings a unique perspective to her patients and their families, truly understanding some of their experiences. The added bonus is that she is near her own healthcare providers if needed. She is lucky to be treated in a facility that has an adult congenital heart program and has developed great relationships with a number of her providers whom she sometimes works alongside while caring for her own patients. Kate continues to be an advocate and supporter of LDSF, often through her writing and photography, as seen on the cover of this edition of Connective Issues . “While writing allows me to empty my head, photography gives me an outlet of storytelling in a different way,” said Kate. “Any kind of photo I can create can be very uplifting or thought provoking. Making photographs helps me capture life – the good, the not-so-good and all the in-betweens. When challenges arise, making photographs helps bring me calm.” Thanks to the passionate and ongoing support of Kate, and many families like hers, we truly are headed for better days ahead.

p Kate and Mo celebrating a family wedding. Photo courtesy of Citrine Pine Photography.

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Winter 2021