An elderly couple who won the lottery are on a mission to find treatment for an incurable disease that tragically claimed the life of their granddaughter.
Paul and the late Sue Rosenau’s two-year-old granddaughter, Makayla Lynn Pike, passed away in 2003 following a battle with a rare-genetic disorder called Krabbe Disease
Krabbe Disease is currently incurable, with it affecting one in 100,000 newborns by destroying the protective coating of nerve cells, with those suffering usually not making it past two-years-old.
But on the fifth anniversary of Makayla’s death in 2008, Paul and Susan’s lives were about to change forever when they checked their Powerball numbers to see they’d won $180.1 million ($144 million).
The Minnesota couple had no hesitation in deciding how to use their winnings, and started a non-profit organisation to fund research to find a cure for Krabbe Disease.
They used $26.4 million to start what is known as the Rosenau Family Research Foundation, which would both fund research and help families who needed help with the cost of medical treatments.
The website states in the ‘Our Story’ section: “Realizing they had an opportunity to have an impact and make some sense out of their granddaughters’ early death, their faith took over.
“They knew their lottery winning wasn’t luck, but a direct message from God, about the opportunity for them to shine a light on this nearly invisible disease and infuse funding into research for finding therapies and treatments so no other family had to go through what they did.”
The Rosenaus have been instrumental in Krabbe Disease and Cystic Fibrosis research in the US. Credit: Rosenau Family Research Foundation
Speaking to PEOPLE eight years after their win, Sue said: “We are faithful people, and we definitely believe this is God telling us what we do.”
The couple were left with just $44 million after taxes from the winning ‘quick-pick cash option’ ticket, meaning that more than half of it was used for their non-profit.
“I found out there was a little person in that body and she couldn’t get out, we’re trying to give these kids the ability to get out.” Paul explained.
For seven years between 2009 and 2016, the foundation has provided researchers with more than $10 million in grants, funding advances in treatments.
Unfortunately, there is still no cure for Krabbe Disease.
There are currently methods to help children with Krabbe Disease manage their symptoms, such as medicine to aid with muscle spasms and seizures, as well as physical and occupational therapy, and palliative care.
The Rosenau Family Research Foundation has helped to raise millions for research into the incurable disease. Credit: Rosenau Family Research Foundation
Back in 2016, there was a breakthrough that had researchers and medical experts hopeful of a new gene therapy, with Dr Maria Escolar – one of Makayla’s doctors and a researcher in the field.
“Without this type of help, we would not be able to achieve our goal of improving the quality of life for children with rare disorders and help them develop to their full potential. We are beyond grateful,” Dr Escobar highlighted.
Stacy Pike, Makayla’s mother, expressed the same feeling, saying: “Their mission is near and dear to my heart.”
The Roseaus quit their jobs and went full-time into the cause, however Sue had to scale back in 2016 as she was being treated for stage 3 ovarian cancer and stage 4 uterine cancer.
Sue sadly passed away in 2018, but the mission of the foundation continues through Paul and all the researchers searching for a cure.
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