In the Northwoods of Wisconsin, one family is showing what it looks like to turn a diagnosis into determination. Rod and Michelle Ankrom learned their son Jonathan had Lowe syndrome just hours after he was born. Since then, they’ve built a life that includes Special Olympics, bocce ball, church, and an Eagle Scout badge — and they’ve made it their mission to make sure more people know what Lowe syndrome is.
This month, that mission reached even further. A local news feature on WJFW in Rhinelander introduced the Ankrom family’s story to their whole community, and a fundraiser held at Jonathan’s workplace, Pizza Ranch, raised $978 for Lowe syndrome research. Every dollar of that total came from neighbors, coworkers, and friends who didn’t know about Lowe syndrome until the Ankroms told them.
A family that leads with both honesty and hope
Rod and Michelle haven’t shied away from the hard parts of Jonathan’s story — the cataracts, the kidney function now at stage four renal failure, the developmental delays that meant he didn’t take his first steps until age three. Most physicians will never see a case of Lowe syndrome in their career, which means families like the Ankroms are often the ones doing the explaining.
But their story doesn’t stop at the diagnosis. Jonathan has hiked 20 miles with his dad to earn his Eagle Scout badge. He plays bocce ball, volunteers at church, and holds down a job — all while managing a condition most people have never heard of. Rod put it simply: when people understand what Lowe syndrome is, they’re more likely to support the research that will change what it means for the next generation.
What their fundraiser tells us
A $978 fundraiser at a local pizza restaurant might not make headlines on its own. But it represents something bigger: a family that turned a rare diagnosis into an ongoing act of advocacy, one conversation and one community event at a time. The Ankroms didn’t wait for someone else to raise awareness about Lowe syndrome in their corner of Wisconsin — they did it themselves, and their neighbors showed up.
That’s what our community does best. Every family who tells their story, hosts a fundraiser, or shares a local news feature strengthens the case for research funding and helps the next newly diagnosed family feel less alone.
Your part in this story
You don’t need a TV crew or a restaurant fundraiser to make a difference for families like the Ankroms. Donate today to directly fund the research and family support programs that help kids like Jonathan reach their highest potential, or share the Ankroms’ story with someone in your own community who has never heard of Lowe syndrome. Awareness starts exactly the way it did in Rhinelander — with one family willing to tell their story.
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