The Importance of Family When Living with Hemophilia: Paul Allen Natvig (September 1953 – October 2023)
The Importance of Family When Living with Hemophilia: Paul Allen Navig (September 1953 – October 2023)
by: Danielle Lennie
Paul Allen Natvig, who passed away last year at the young age of 70, was a humble man. Following his hemophilia diagnosis at birth, when doctors said he would not live past the age of 13, Paul was determined to see his personal achievements surpass medical predictions. Rather than being defined or limited by his illness, Paul lived beyond what was expected and built the life he and his family wanted and deserved, establishing a home in a neighborhood on Monona Bay in Madison, where he and his wife raised their two children.
Growing up, Paul was encouraged by his parents, David and Mildred, to spend his childhood like other boys his age, which for Paul meant playing sports and trying to outdo his younger brother, Dan. Paul enjoyed a special bond with his siblings – Kristine, Eileen and Daniel. In their words, “As Paul’s siblings, it was a privilege to be a part of his life. To the rest of the world, we all grow old. But not brothers and sisters. We know each other as we always have. We know each other’s hearts. We share a lifetime of family joys, sadness, but most of all love.”
Paul graduated from West High School in Madison in 1976 and went on to earn an associate degree from Madison Business College. He spent 26 years working as a custodian for the Madison Metropolitan School District, primarily at Franklin Elementary, where both of his children, David and Emi, attended. “We have heard a lot over the years about families living with hemophilia who need to get new jobs or move just to obtain insurance due to the expense of treating the disease,” said David. “We know we are fortunate that we never experienced that, partly due to the benefits our dad received from his job.”
Paul considered his family among his most important achievements. That included his marriage to his wife of 38 years Jan; his son, David (41), who did not inherit hemophilia; and his daughter, Emi (37), who is a carrier for hemophilia. “My dad always taught me to advocate for myself. He certainly learned to advocate for himself over the years,” said Emi. “I am a carrier of hemophilia, but I am also a type I diabetic. My dad taught me to never be defined by my illness, but rather to be defined by the fact that I am a smart, bright, funny person, not just a diabetic,” she continued. “My father’s chronic illness helped me learn, in many ways, how to live with my own.”
Natvig Family Photo : Jan Natvig (holding Emi); Paul Natvig (holding David).
David said that his father never viewed hemophilia negatively, though he knew it was serious, and he could die from it. He looked at it as “the cards he was dealt.” Paul also knew he was lucky to survive as long as he did – noting people with the same disease often died much younger. “My dad knew he was fortunate. Which is why he really liked to keep things simple,” said David. “He enjoyed family, having a beer with friends and neighbors, the outdoors, being on the boat, fishing, and watching Brewers games. It was a normal life, aside from dad’s hemophilia.”
Paul knew people looked at him differently when he walked. He couldn’t bend his knees the way other people could due bleeds he experienced throughout his life – bleeds that caused permanent joint damage. Paul also played guitar, which unfortunately became more difficult towards the end of his life due to joint damage in his elbow.
Although the Natvig’s always worked together to get through obstacles put in front of them, they didn’t share too much about Paul’s hemophilia outside of the family, except for some close friends. It wasn’t a secret. It just didn’t feel necessary. And Paul never wanted people to look at him as having a disability. He simply didn’t wear hemophilia on his sleeve.
“As a young person, you don’t always know what it all means, especially if it’s more controlled. Hemophilia was just always a part of our lives. We kept everything as normal as possible,” said David. “In general, I think my father, and our entire family maybe, had to work a bit harder for things. He was very much a believer that people should accept things the way they are and do the very best with what they’re given. We all felt fortunate.”
Most of all, Paul taught his children to never stop moving or learning new things. “He was a concrete example of what perseverance is – and David and I both inherited that quality – a good quality for life,” said Emi.
Ultimately, Paul lived by some very simple but profound rules: Don’t ever give up. Do your best. Have agency over your own body. Be an advocate for yourself and your family members. Keep moving and trying new things. If you can’t do something because of your health, move on and try something new. Keep working as long as you can. And try to carve out a nice life for yourself!
Paul is survived by his son, David Natvig (Alder Swanson) of Stavanger, Norway; his daughter, Emi Natvig (Kyle Davis) of Monona, WI; his siblings, Kristine Natvig DeCato of Hill City, KS; Eileen Natvig-Bocchi (Donald) of Chandler, AZ; Daniel Natvig of Sun City, AZ.; his close companion Julie Quandt of Madison, WI; and numerous close friends and family members. He was preceded in death by his parents; and his wife, Jan (Roelke) Natvig.
David Natvig (41), graduated from UW-Madison with a BA (2005), MA (2013), and PhD (2018). He is currently working in Norway as an Associate Professor in Scandinavian Linguistics. Emi (37), lives in Monona, WI. She works in Quality Assurance in the Pharmaceutical Industry.
To learn more about hemophilia, visit glhf.org.