My name is Robin Schultz. Online, some people know me as @violinrobin. In real life, I’m a husband to Brooke and a father to two beautiful children—Noah and Zipporah. Our life looks full, loving, and hopeful from the outside. And in many ways, it is. But behind that love is a story we never expected to be living.
In 2023, our son Noah was born. From the very beginning, we knew something was different—but different never meant less. Noah is gentle, bright, and full of quiet strength. Yet as time passed, it became clear that his body wasn’t developing the way other children’s bodies do. At three years old, Noah cannot speak, sit up, crawl, or walk. Every day requires support, patience, and deep love.
Noah needs in-home therapy four times a week—care that helps him build connections his body struggles to make on its own. It’s not optional. It’s not temporary. It’s his lifeline.
In 2024, we sought genetic testing to understand why Noah faced these challenges. We were searching for answers for our son. Instead, the answer found me.
The tests revealed that I carry Fabry Disease, a rare genetic condition affecting only about 6,000 people in the United States. It’s a disease that quietly attacks the body over time—damaging nerves, blood vessels, kidneys, the heart, and even the brain. There is no cure. Only management. Only endurance.
For me, Fabry Disease means daily nerve pain in my hands and feet, constant exhaustion that sleep doesn’t fix, and brain fog that makes even simple moments feel heavy. And while treatment exists, it comes with a price that feels unreal: $360,000 a year.
Between Noah’s therapy and my treatment, our family’s medical reality adds up to nearly half a million dollars every year. Insurance covers much of it—but not all. What remains still feels crushing. The kind of numbers that don’t care how hard you work or how much love you give.
And yet… we keep going.
Because Noah smiles.
Because Zipporah laughs.
Because Brooke never stops being strong.
Because life, even when it’s hard, is still precious.
This isn’t just a story about illness. It’s about a family learning how fragile and resilient life can be at the same time. It’s about the quiet moments after appointments, the long nights of worry, and the fierce love that refuses to disappear under the weight of numbers, diagnoses, and uncertainty.
There’s so much more behind these words—more than can fit into a single post. The full story lives beyond this space, and if you take a moment to read it, you’ll understand why every shared breath, every small milestone, and every act of kindness matters more than ever.
