NKH Awareness Month: Honoring Aarya’s Legacy and the Gift of Four Precious Years

When Aarya came into the world, our lives were turned upside down. Maurice and I were just 18, full of hope and excitement to meet our baby girl after a picture-perfect pregnancy. But on December 2, 2018, everything changed.

A Life-Changing Birth

I went into labor that day, but complications quickly arose. I was going septic, and Aarya was unresponsive. I was rushed in for an emergency C-section. Nothing prepares you for that level of fear.

Ten days later, we were sat down in a cold conference room and given a diagnosis we had never heard of—Non-Ketotic Hyperglycinemia (NKH). What followed were devastating words: that we should "unplug" her. That there was no hope. That she wouldn’t survive the month.

But we weren’t done fighting—and neither was Aarya.

Aarya’s Fight and the Gift of Time

We chose to fight for our daughter, to give her every chance possible. What doctors predicted would be one month turned into four full years. Four years of love, of learning, of holding her, cherishing her, and watching her grow in her own way.

Those years were not easy. Our days revolved around medication schedules, gtube feeds, weekly appointments, and more. There were, on average, at least two hospitalizations a month in the PICU. NKH took a toll on Aarya’s body, wearing it down piece by piece. But still, she fought. Still, she smiled.

Saying Goodbye

On December 8, 2022—just four days after her fourth birthday—our sweet Aarya passed away. Her body had endured too much. Though her time with us ended, her legacy lives on. Aarya changed us. She changed our hearts, our world, our future.

She taught us to live in the moment, to never take a breath for granted, and to keep fighting even when the odds feel impossible. NKH Awareness Month: Honoring Aarya’s Legacy and the Gift of Four Precious Years

NKH Awareness Month: Honoring Aarya’s Legacy and the Gift of Four Precious Years

Aarya made a mark on everyone she met. Her strength, her spirit, her story—these continue to inspire. We miss her more than words can express. We wish she could meet her little sister, but we know she’s watching over us. We carry her with us every single day.

We love you, sweet girl. Momma and Dada hope we’re making you proud. Fly high, our sweet bumblebee. 🐝❤️

Help Us Honor Aarya’s Life

This NKH Awareness Month, we ask that you help us continue Aarya’s fight. Support the research that may one day bring treatments—and a cure—to children like her.

❤️ Donate in Aarya’s honor: Support Dr. Van Hove’s NKH research

📣 Share her story and the stories of other NKH warriors.

🌎 Be a voice for rare diseases. Awareness leads to funding. Funding leads to research. Research leads to hope.

📬 Do you have an NKH story to share? We'd love to feature it on the NKH Crusaders blog. Submit your story here