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Powerball Winners Feel Led to Make a Difference

By Jim Rogalski

Paul and Sue Rosenau pose with a photo of their grandaughter Makayla when she was 1 year old.Paul and Sue Rosenau have a special photograph of their granddaughter Makayla. She is two months old, dressed in a yellow outfit with a yellow ribbon tied about her silky brown hair. A wide smile graces her face, which is further accented by sparkling blue eyes.

It is the only photo they have of their granddaughter smiling.

Within a month of that photo being taken, Makayla was diagnosed with Krabbe disease, a rare neurodegenerative disorder affecting the central and peripheral nervous system.  Early symptoms include irritability, stiffness, difficulty in feeding, loss of motor functions, and seizures. Most babies with Krabbe disease die within two years.

Makayla was no exception.

 "You feel so helpless that there is nothing you can do to make things better," Sue says. "My heart died the day she was diagnosed, and again when she died."

 "We all tried to make Makayla's life comfortable and establish as many good memories as possible," Paul says.

Where they once felt helpless as they watched Makayla's physical abilities slowly deteriorate, the working-class couple now feel empowered that they can do something significant to combat this devastating disease that affects an estimated one in 100,000 newborns.

Last May, the Rosenaus, of Waseca, Minn., won the $180 million Powerball Lottery five years to the day of Makayla's death. The Rosenaus believe it was no coincidence.

"Things like this just don't happen," Sue says. "God has a plan, and his plan is to have us do something good with this."

The Rosenaus have donated an initial $250,000 to Duke Medicine to establish the Legacy of Angels Fund in Makayla's honor. It supports the ground-breaking research of Duke's Joanne Kurtzberg, MD, a world leader in the use of umbilical cord transplantation from unrelated donors to combat disease, including Krabbe disease.

"Dr. Kurtzberg is really pushing to do something about this disease," Paul says. "We feel she is a champion for children. Duke is the place doing the largest amount of research and we are excited that we can help."

Kurtzberg is the director of the Duke Pediatric Blood and Marrow Transplant Program and professor of pediatrics and pathology. In 1993, Kurtzberg was the first-ever to perform an unrelated cord blood transplant on a leukemia patient. Duke now has the largest cord blood transplant program in the country.

She discovered that umbilical cord blood transplantation can be an effective treatment for Krabbe disease when caught presymptomatically

Unfortunately, by the time Makayla was brought to Kurtzberg, the disease had progressed beyond where treatment would help. But Kurtzberg says the Rosenau's gift offers inspiration to families who will experience Krabbe disease in the future.

"Duke is the place doing the largest amount of research
and we are excited that we can help." 
- Paul Rosenau 

"The Rosenau's generosity enables us to explore Krabbe research in new directions and hopefully come up with alternatives in detecting the disease early and improving the child's quality of life as soon as possible," Kurtzberg says.

The Rosenaus also are establishing their own non-profit, The Legacy of Angels Foundation. Its mission is to find both a better treatment and a cure for Krabbe disease; to promote and expand the Newborn Screening Program throughout the nation to mandate testing of newborns for the disease; and to further research in finding a cure for cystic fibrosis.

"We got blind-sided by this disease," Paul says. "We knew nothing about it at first but got involved with other families going through it. We were all trying to find answers. We came to Duke because it's the best in the world for this disease."

The Rosenaus still work their middle-class jobs-he as a construction foreman, she as a part-time principal administrative specialist at the University of Minnesota College of Agriculture, Food and Environmental Science. They spend the bulk of the rest of their time working to get their foundation up and running and traveling to learn more about how they can help to move research forward to accomplish their mission. They are working with the Minnesota March of Dimes and Minnesota Department of Health to include screening for Krabbe disease. New York currently is the only state that requires testing for Krabbe disease.

 "While many diseases could or should be added to newborn screening, Krabbe is important because treatment is significantly more beneficial if given in the first month of life," Kurtzberg says. "Every day without treatment affects the abilities and capabilities in the life of the child."

The Rosenaus were back at Duke recently visiting a family they have befriended whose daughter has Krabbe disease and was treated by Kurtzberg as an infant. The girl is now 9 years old.

"I spent an hour running and playing hide-and-seek with her," Paul says. "I would estimate her motor skills are probably 85 percent and her mental ability is 100 percent. I was just blown away."

 Sue adds that "it's our hope and dream to help save other families and children from going through this. If we help to save one child it is worth it."

For information about contributing to Kurtzberg's research through the Legacy of Angels Fund at Duke Medicine, contact Tom Kosempa at 919-667-2602.