NKH Awareness Month: Honoring Ronan and Fueling Hope for a Cure

May is NKH Awareness Month—a time that means the world to our family. I'm Angie, Ronan's mom, and every year this month brings a mix of heartache, reflection, gratitude, and renewed determination. Our son Ronan lives with NKH (Non-Ketotic Hyperglycinemia), a rare and devastating genetic disorder that few have heard of but too many families are forced to navigate.

Ronan's Story: From the Beginning

Ronan turned 5 years old on March 21st. We are a military family currently living in Hawaii, and like many NKH families, our journey began with a confusing and terrifying experience. Ronan's delivery was smooth, and we were fortunate to go home the next day. But just three days later, he became extremely lethargic. We rushed to the ER where he was immediately intubated and remained on a ventilator for two weeks.

Doctors performed extensive tests—X-rays, MRI, MRA, MRV, two EEGs, and countless blood draws—but still couldn’t explain what was happening. Most results came back normal, and though his MRI showed slight abnormalities, there were no clear answers. Eventually, we were discharged with referrals to a neurologist and a metabolic specialist.

Two months later, after testing Ronan’s DNA, we finally received a diagnosis: Non-Ketotic Hyperglycinemia. We were told Ronan was on the severe end of the spectrum due to his early symptoms. The doctors painted a bleak picture—he might never talk, walk, or even hold his head up. I still remember that moment vividly; it shattered my heart. But somehow, despite the fear, something inside me clung to hope.

Defying the Odds: Ronan's Progress

Ronan didn’t let that prognosis define him. He began to hold his head up, then roll over, crawl, and eventually walk. Today, he runs just as fast as his older sister. He attends preschool and continues to grow and learn every day.

He receives speech and occupational therapy twice a week and physical therapy once a week. Before starting school, his therapy schedule was even more intensive—three sessions of OT and PT weekly, two speech sessions, and early intervention once a week. He can say “mama” and “papa,” uses sign language to communicate, and loves blowing kisses when we say goodbye. His hugs? They’re the tightest, most heartfelt hugs you’ll ever receive.

Of course, life with attenuated NKH is far from easy. Ronan can be aggressive—he bites, hits, and needs constant supervision for his safety and the safety of others. We never get to fully relax or let him wander off at a playground. Our daily routine revolves around medication schedules and therapy appointments. And when Ronan gets sick, it almost always ends in a trip to the ER. You’d think we’d be used to it by now, but the fear never fades. The worry is constant.

What Is NKH?

NKH is caused by a defect in the glycine cleavage system. This leads to an accumulation of glycine in the body, especially in the brain. It sounds simple, but the reality is crushing. Glycine, when it builds up, becomes toxic to the central nervous system. The consequences can range from severe developmental delays and seizures to an inability to move, speak, or even swallow. There is no cure—yet.

NKH Awareness Month: Honoring Ronan and Fueling Hope for a Cure

For most of the world, May brings blooming flowers, spring sunshine, and countdowns to summer. But for NKH families, May is a chance to shine a light on our children, to be seen and heard, and to demand better. It’s a month to say: our children matter, and they deserve a future.

Every post, every conversation, every share makes a difference. NKH is classified as an "ultra-rare" disease, and because of that, it often flies under the radar when it comes to research funding. But awareness leads to support, and support fuels science.

Fundraising for Hope: Dr. Van Hove’s Research

We are proud to support Dr. Johan Van Hove’s fundraiser, benefiting his pioneering NKH research at the University of Colorado Anschutz Medical Campus. Dr. Van Hove has been a lifeline for many of us in the NKH community. His work is tireless, brilliant, and deeply personal.

Funds raised this May go directly toward continued research, lab advancements, and (we hope) treatments that can extend and improve the lives of children like Ronan. We’ve seen the breakthroughs he’s been part of. We’ve felt the hope that comes with each new step forward.NKH Awareness Month: Honoring Ronan and Fueling Hope for a Cure

How You Can Help

1. Donate: Even the smallest gift can help change a child’s life. Visit our fundraising page

2. Share Our Story: Awareness starts with education. Share this post. Talk about NKH. Start the conversation.

3. Support NKH Families: Whether it’s a kind word, a listening ear, or simply acknowledging our struggles—your compassion goes a long way.

Ronan, Our Warrior

Ronan’s days are filled with challenges most people can’t see. But through it all, he continues to fight with a strength that humbles me every day. His laugh, his spark, his determination—they’re reminders of why this work matters so much.

We fight for him. For the children we’ve lost. For the families walking this road alongside us. And for the children who haven't been diagnosed yet but will need this community and this research.

Thank You for Standing With Us

This month, and always, thank you for reading. Thank you for caring. And thank you for helping us make NKH a little less invisible.

Please, if you can, donate here and be a part of our journey 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