NKH Awareness Month: Celebrating Charlotte’s Strength and Unyielding Hope

We have been blessed with a beautiful daughter named Charlotte—she is 6 years old. To be able to say that she is 6 is an achievement in and of itself, because every day is a fight to keep her healthy and safe. Her life, like many others with NKH, began with uncertainty, but it’s been powered ever since by her strength and our hope.

Charlotte’s Early Signs and Life-Saving Intervention

Just days after she was born, Charlotte began showing signs that something wasn’t right. She was unusually sleepy, had a floppy tone, and wouldn’t eat. We went to the doctor multiple times, but it wasn’t until she was finally admitted to the hospital that things escalated—and fast. She ended up in the NICU, intubated and fighting for her life. That’s when we learned she was having seizures.

By what can only be described as fate, two doctors suspected she might have NKH and immediately started her on dextromethorphan and sodium benzoate. That night, something miraculous happened—Charlotte opened her eyes.

She slowly began to wake up more, showing little signs of improvement. But we still had to wait several excruciating weeks for genetic testing to confirm the diagnosis of Non-Ketotic Hyperglycinemia.

The Blurry First Year: A Crash Course in Survival

Much of Charlotte’s first year is a blur. Between battling seizures, constant medication adjustments, and a stream of other medical complications, our days were consumed with therapies, hospital visits, and learning how to care for a medically complex child. It was overwhelming, exhausting, and terrifying.

But through it all, Charlotte continued to show us her quiet strength. She began responding to therapy, and although progress was slow and hard-won, it was progress nonetheless. Her courage inspired us to keep fighting—no matter how difficult it became.

Life With NKH: Daily Vigilance, Unwavering Love

As Charlotte has grown, so have the demands of her condition. Respiratory issues are common and incredibly dangerous for her. Even a simple cold can—and often does—send her to the hospital.

Our daily life is centered around caring for her. From managing medications and therapies to anticipating potential emergencies, our minds are always running. We plan her care meticulously, drawing on support systems and medical guidance, but the emotional and physical toll is ever-present.

We are tired to the core. But we push forward, because Charlotte deserves the very best life we can give her. NKH Awareness Month: Celebrating Charlotte’s Strength and Unyielding Hope

NKH Awareness Month: Celebrating Charlotte’s Strength and Unyielding Hope

NKH is a rare genetic disorder that disrupts the body’s ability to break down glycine, leading to a toxic build-up in the brain and body. Symptoms vary, but they often include seizures, developmental delays, feeding difficulties, and respiratory problems.

Because it is so rare, NKH is drastically underfunded and under-researched. That’s why NKH Awareness Month is so critical. Every share, every conversation, every donation brings us one step closer to better treatment—and one day, a cure.

Support the Science: Dr. Van Hove’s Research

This May, we’re supporting Dr. Johan Van Hove’s groundbreaking NKH research at the University of Colorado Anschutz Medical Campus. His work is dedicated, pioneering, and one of the few sources of hope for families like ours.

Your support will go toward research and treatments that could change the lives of NKH children around the world.

How You Can Help Charlotte and Children Like Her

• 🧡 Donate: Support Dr. Van Hove’s NKH research

• 📣 Raise Awareness: Share Charlotte’s story and talk about NKH.

• 💬 Be Present: Sometimes the greatest gift is simply being there for families like ours.

Our Promise to Charlotte

We will continue to fight for Charlotte every single day. She is more than her diagnosis—she is brave, she is beautiful, and she is so incredibly loved.

Thank you for standing with us this NKH Awareness Month. Please share, donate, and help us make sure no NKH family ever feels alone.

👉 Donate Now

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