Money doesn't fix everything. Most of us spend our lives dreaming of that one ticket, the slip of paper that erases the mortgage, buys the dream car, and secures the kids' future. But for Paul and Sue Rosenau, the $180.1 million Mega Millions jackpot they won in 2008 arrived at a moment so bittersweet it feels like a script from a heavy-handed drama. It wasn't just a win. It was a catalyst for one of the most poignant stories of philanthropy born from a crushing personal loss.
They were regular folks from Waseca, Minnesota. Paul worked at a heavy machinery dealership; Sue was an office coordinator. They lived the kind of quiet, midwestern life where you buy a lottery ticket on a whim because the jackpot hit a number that sounds like phone digits. On May 3, 2008, Paul stopped at a Kum & Go. He bought a ticket. He didn't know that five numbers and a Mega Ball were about to change his bank account while his heart was already breaking.
The Night Everything Changed
The timing of the win is the part that sticks in your throat. They won on the exact five-year anniversary of their granddaughter Makayla’s death. Makayla passed away in 2003 when she was just two years old. The cause? A rare, ruthless condition called Krabbe disease. It’s a neurological disorder that basically strips away the protective coating of nerve cells. It's devastating. Watching a child go through that is a special kind of hell that most people can't even fathom.
So, here they are, five years to the day after losing her, holding a ticket worth $180 million. Paul has said in various interviews that he felt Makayla had a hand in it. It wasn't luck to them. It was a sign. A weird, overwhelming, massive sign that they needed to do something with that money that mattered more than Ferraris or mansions.
They took the lump sum. After taxes, it was roughly $88 million. Think about that for a second. You go from a modest salary to $88 million in the bank while you’re still mourning a child. Most people would disappear. They didn't. They stayed in Waseca for a long time. They kept their heads down. But they had a plan.
Understanding the Weight of Krabbe Disease
To understand the Paul and Sue Rosenau tragedy, you have to understand what they were fighting. Krabbe disease (globoid cell leukodystrophy) is rare. We're talking maybe 1 in 100,000 births in the U.S. because it's so rare, it doesn't get the "Big Pharma" funding that more common diseases do.
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The science is brutal. The body lacks an enzyme called galactosylceramidase (GALC). Without it, a substance called psychosine builds up and kills the cells that produce myelin. Myelin is the insulation for your brain’s wiring. Without insulation, the wires short out. Babies with the early-onset form—like Makayla—usually seem healthy at birth. Then, around 3 to 6 months, things go south. Irritability, fevers, limb stiffness, and eventually, the loss of the ability to swallow or breathe.
The Birth of The Legacy of Angels
The Rosenaus didn't just write a few checks to local charities. They founded The Legacy of Angels Foundation.
This wasn't some vanity project. It became a powerhouse for Krabbe research and newborn screening advocacy. Before the Rosenaus stepped in with their millions, many states didn't screen for Krabbe. Why? Because the treatment—usually a cord blood transplant—has to happen before symptoms appear to be effective. If you wait until the baby looks sick, it's often too late.
They poured millions into research. They funded labs at the University of Pittsburgh and worked closely with Dr. Maria Escolar, a leading expert in the field. They weren't just "the lottery winners." They became "the Krabbe people." They flew to medical conferences. They met with legislators. They became the voice for families who were getting the same terrifying diagnosis they received years prior.
Why Advocacy Matters More Than the Money
Honestly, the money was just the fuel. The real engine was Sue Rosenau’s tenacity. She was the heart of the foundation. She spent years talking to mothers who were terrified, walking them through the clinical trials and the specialists.
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The foundation's work actually helped shift the landscape of newborn screening. They pushed for the "Recommended Uniform Screening Panel" (RUSP) to include Krabbe. It’s a slow, bureaucratic nightmare to get a disease added to state testing lists. Every state has different rules. Some states argue about the cost-effectiveness of testing for a rare disease. The Rosenaus countered that by basically saying, "How do you put a price on a child’s life when we have the technology to save them?"
Another Blow to the Rosenau Family
Life is rarely fair, and the Paul and Sue Rosenau tragedy took another turn that feels particularly cruel. After spending years saving other people’s children and fighting for medical progress, Sue Rosenau was diagnosed with cancer.
She passed away in July 2018.
It felt like a gut punch to the rare disease community. Sue had become a beacon. She had taken her grief, paired it with a statistical miracle (the lottery win), and turned it into a shield for others. When she died, the mission didn't stop, but the tone changed. Paul had to carry the torch without his partner.
You’ve got to wonder how a person stays grounded through that. You win the lottery, which is supposed to be the "happily ever after," but you lose your granddaughter and then your wife. It’s a lot for one person to carry. Paul has remained remarkably private and dedicated, continuing the work of the foundation and ensuring that Sue’s energy remains part of the fight.
The Reality of the "Lottery Curse" vs. The Rosenau Reality
We’ve all heard the stories about lottery winners who go broke in two years. They buy the gold-plated toilets and get sued by their cousins. The Rosenaus are the antithesis of that trope. They didn't fall into the "curse" because their win was rooted in a pre-existing purpose.
They did buy some nice things, sure. Paul bought a beautiful plot of land and built a home. They enjoyed their lives. But the bulk of that money was treated like a trust for the kids who hadn't been born yet.
What Research Has Been Funded?
The Legacy of Angels didn't just throw money at the wall. They targeted specific gaps in the medical system:
- Newborn Screening Technology: Developing faster, more accurate ways to detect GALC enzyme deficiency.
- Clinical Trials: Funding the infrastructure for Dr. Escolar's Program for the Study of Neurodevelopment in Rare Disorders (NDRD).
- Family Support: Providing actual, tangible help for families traveling to specialized centers for transplants.
Because of their funding, the medical community has a much deeper understanding of how Krabbe progresses. They've helped prove that early intervention works. There are kids alive today—"Krabbe warriors," as the community calls them—who would not be here if the Rosenaus hadn't won that jackpot and decided to give it away.
A Legacy That Outlives the Jackpot
The Paul and Sue Rosenau tragedy is a story of circularity. It began with the loss of Makayla, was transformed by a $180 million windfall, and continues through the lives of the children the foundation saves.
It’s easy to look at a lottery winner and feel a twinge of envy. But when you look at the Rosenaus, that envy usually turns into a weird kind of gratitude. If anyone was going to win that much money, it’s a relief it was people who knew exactly what a life was worth.
They didn't just win the lottery; they won a chance to rewrite the ending for other families. Even though Sue is gone, the foundation remains one of the most significant private funders of leukodystrophy research in the world.
Lessons from the Rosenau Story
If there's anything to take away from this, it’s that wealth is a tool, not a destination. The Rosenaus didn't let the money change their values; they used the money to amplify them.
- Purpose-driven living: They had a "why" before they had the "how."
- Persistence in the face of bureaucracy: Changing medical laws is harder than winning the lottery, yet they did both.
- Community over self: They remained part of Waseca and part of the rare disease community, never insulating themselves from the world's pain.
How to Support the Cause Today
While you might not have $88 million to drop on a foundation, the work the Rosenaus started continues. You can actually make a difference by staying informed and advocating for newborn screening in your own state.
- Check your state’s screening list. Look up what your state tests for at birth. If Krabbe isn't on there, write to your local representatives. It sounds cliché, but for rare diseases, legislative pressure is the only way things move.
- Support The Legacy of Angels Foundation. You can visit their site to see the current research projects they are backing. They are still active and still focused on the mission Sue and Paul started.
- Educate others about Leukodystrophy. Awareness is the first step toward funding. The more people know these diseases exist, the more pressure there is on the medical industry to find cures.
- Follow the science. Keep an eye on gene therapy developments. The funding provided by the Rosenaus has paved the way for modern gene editing techniques that might one day make Krabbe a thing of the past.
The tragedy of Paul and Sue Rosenau isn't just about the loss they endured. It's about the refusal to let that loss be the final word. They took a ticket to a better life and used it to buy hope for everyone else.