CDG/PMM2 2nd Annual Golf Charity

Our Story: A Journey Fueled by Hope

When our son Christian was born, we were filled with the same dreams every parent has — watching him grow strong, learn to walk, talk, laugh, and live a life full of possibility. But early on, something felt different. Christian wasn’t meeting milestones. He was struggling to gain strength, and his development seemed delayed. As parents, we trusted our instincts — but the answers were hard to come by.

We saw five pediatricians. Each time, we were told to “wait and see,” or that Christian was just developing on his own timeline. But we knew in our hearts that something more was going on. We pushed forward — not out of fear, but out of love. We refused to accept “we don’t know” as an answer. Finally, we found a specialist who listened. One who didn’t brush off our concerns. That doctor ran a specific genetic test. It was the first time anyone dug deeper. The results changed our lives forever.

Christian was diagnosed with PMM2-CDG, a rare congenital disorder of glycosylation. A condition so rare that many doctors have never even heard of it. It affects nearly every system in the body — from neurological to muscular to metabolic — and there is currently no cure. Every Step is a Victory. Since that day, Christian has had to fight for every small victory. He’s undergone physical therapy, occupational therapy, and speech therapy just to do the things many of us do without a second thought.

Even something as simple as walking requires strength, balance, and help. To this day, Christian can only walk with assistance — from a parent, a therapist, or someone nearby. Watching someone you love struggle for every step is one of the hardest things a parent can witness. And yet — he never complains. He smiles. He fights. He moves forward.

All Christian has ever wanted is to walk on his own. So when I had the opportunity to move into a condo where we could create a space that supported his independence, we made it happen. I installed assistive rails in his bedroom, down the hallway, into the bathroom, and all the way to the kitchen. And we saw a different Christian.

He now wakes up, grabs the rails, and walks — step by step — to the bathroom, to the kitchen — on his own terms. With confidence. With joy. That simple change gave him something many take for granted: freedom.

Why We Started the CDG–PMM2 Hope Foundation

This is why we started the CDG–PMM2 Hope Foundation — to give that same kind of breakthrough to other families. Our foundation exists to support children, teens, and young adults living with CDG by providing them with the tools, equipment, and care they need right now. From assistive devices to wheelchairs, medical equipment to custom modifications — our mission is to create immediate, meaningful impact.

We don’t wait for a cure to someday arrive. We help families today — so their child can thrive today.This is about dignity. This is about quality of life. This is about doing what we can, when it matters most. We Believe in This — Because We Believe in Christian.

Every board member involved in the CDG–PMM2 Hope Foundation stands behind this mission with full hearts and unwavering dedication. We don’t just believe in the work — we believe in Christian, and in every child like him.

This foundation is rooted in love, built on compassion, and powered by a united team that gives their time, energy, and passion to help families feel seen, supported, and never alone.You Can Be the Difference. Christian is still fighting. And so are we.

With your help, we can bring hope to more families. We can give more children a chance to feel strong, capable, and supported. Every donation — big or small — helps make an immediate, tangible difference in someone’s life. You’re not just giving —you’re changing the story.

Together, let’s shine a light on rare diseases.
Let’s lift families who feel forgotten.
Let’s give children the tools they need to keep moving forward —
one step, one smile, one breakthrough at a time.

Join us. Support the mission. Be their hope.