They saw the lottery win as a ‘sign from God’
An elderly couple decided to spend tens of millions of dollars on finding a cure for the disease that claimed the life of their young granddaughter.
Two-year-old Makayla Lynn Pike passed away in 2003 following a battle with Krabbe Disease, an incurable genetic disorder that affects one in 100,000 newborns.
The disease destroys the protective coating of nerve cells, and those diagnosed rarely making it past the age of two.
On the fifth anniversary of Makayla’s passing though, her grandparents Paul and Susan Rosenau won a staggering $180.1 million ($144 million) on the lottery.
The Minnesota couple were in no doubt about what to do with the money either, and decided to set up a foundation to help find a cure for Krabbe Disease.
The pair spent $26.4m of their winnings – which ended up being more than half of their take-home winnings of $44m after tax – on starting the Rosenau Family Research Foundation, with the aim of funding research into the disease and helping families who need help with the cost of medical treatments.
They both quit their jobs and committed full time to their foundation, believing that the lottery win was a “direct message from God” to “shine a light” on the disease.
The foundation website says: “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.”
Speaking to People in 2016, Sue said: “We are faithful people, and we definitely believe this is God telling us what we do.”
“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.
Between 2009 and 2016, the foundation has provided more than $10m in grants to researchers. Whilst a cure is still yet to be found for Krabbe Disease, there are methods and medicine to help children with the disease manage their symptoms. This includes treatments to help with muscle spasms and seizures, and physical and occupational therapy.
Dr Maria Escolar, a researcher in the field who was also one of Makayla’s doctors, praised the foundation’s work and the impact it has had on “improving the quality of life for children” with the disease.
She said: “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.”
Makayla’s mother, Stacey Pike, added: “Their mission is near and dear to my heart.”
Sue sadly passed away in 2018 from cancer, but Paul and the researchers continue to lead the foundation’s important work.
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