A Journey of Hope, Heartache, and Resilience
Sixteen years ago, on April 2, 2008, our world changed forever. Brodyn entered this world with a future unknown, a journey we could never have anticipated. From the moment he was born, something felt different. But despite my instincts, doctors reassured me—“he’s fine, just a little jaundice.”
But he wasn’t fine.
As the months passed, red flags multiplied—lethargy, feeding difficulties, unrecognized seizure activity, and delays in even the simplest developmental milestones. And then, on February 15, 2009, at just 10 months old, our world shattered. I walked into his room to find my baby unresponsive. His color was wrong. His breathing was wrong. By the time we reached the hospital, he had stopped breathing entirely.
After eight harrowing days in the hospital, by God’s grace, Brodyn was breathing on his own. But we were left with more questions than answers—until two months later, when a geneticist confirmed what no parent ever wants to hear: Non-Ketotic Hyperglycinemia (NKH). A rare and devastating metabolic disorder.
Defying the Odds Every Step of the Way
The doctors told us he wouldn’t live to see his first birthday. That if he did, he wouldn’t sit up, crawl, walk, or talk.
They didn’t know Brodyn.
At 18 months, he sat up independently. At two, he crawled. And at three—just three days before Christmas—he walked.
Now, at 16, Brodyn continues to defy expectations. He participates in adaptive sports, loves go-karting, and dreams of being a firefighter. Our days look much different than those early years. His strict medication schedule has been reduced to three times a day (from six). He attends a year-round private school for children with severe brain injuries, where he receives ABA therapy and other critical interventions. He even practices martial arts multiple times a week, strengthening his body and mind.
The Harsh Reality of NKH Treatment
Despite his incredible progress, NKH is a relentless disease. The treatments are as brutal as the condition itself.
Brodyn takes sodium benzoate to help reduce glycine levels, a treatment that was denied to him for eight months. While it has been effective in managing his seizures, it is also toxic. Over the last 13 years, he has endured over 17,000 doses of this corrosive medication—burning his esophagus and stomach, forcing him onto omeprazole, which now puts his liver and kidneys at risk.
The dietary restrictions are equally cruel. Sodium benzoate combined with Vitamin C is carcinogenic, meaning every meal, every snack, every sip of juice must be meticulously planned to avoid dangerous interactions. It also depletes carnitine, a vital compound for low-tone children like Brodyn, compounding the challenges we already face.
The Daily Battle: Behavioral and Cognitive Challenges
While NKH affects every part of Brodyn’s life, the most difficult aspect is his behavior.
Children with Attenuated NKH are often called “the mild and wild.” Managing his behaviors requires constant vigilance. His IQ of 43 affects his ability to process danger, reducing his independence. He has wandered into the street, into neighbors’ homes—unaware of the risks. He requires assistance with dressing, bathing, and toileting, and remains incontinent at night.
The challenges go beyond our home. Schools have suspended him for behaviors directly linked to his condition. I homeschooled him until we could find a suitable alternative. We’ve undergone intense cognitive behavioral therapy—cameras placed throughout our home, doctors monitoring us in real-time, training in restraint holds. We have been investigated for child abuse due to self-inflicted wounds, a devastating experience for a family that has fought tirelessly to keep their child alive.
The Silent Killer: Infections and Immune System Fragility
For many attenuated NKH children, the greatest threat isn’t glycine—it’s infection.
A simple virus or flu can send Brodyn into uncontrollable, dangerous movements known as chorea. Infections take months to recover from, and they are claiming the lives of children in our community far too often. Protecting his immune system is critical.
Looking to the Future: The Hope for New Treatments
Although Brodyn is considered “stable,” NKH continues to dictate his every moment. If a treatment could lower glycine levels without the toxicity of sodium benzoate, it would be life-changing—not just for him, but for our entire family. It could improve his IQ, reduce his disruptive behaviors, and provide him with a level of independence we can barely dare to dream of.
But time is not on our side. We need more research. More treatments. More hope.
-Heidi Leslie, Brodyn's mom and fiercest advocate
How You Can Help
February is Rare Disease Awareness Month, and NKH needs a voice. Brodyn and children like him need a voice.
You can help by:
Sharing this story. Awareness saves lives. The more people who know about NKH, the more momentum we can build toward better treatments.
Supporting NKH research. Organizations like NKH Crusaders are working tirelessly to fund research for better treatments and, one day, a cure. Every donation brings us closer.
Advocating for medical progress. Rare diseases are often overlooked in medical research. Speak up. Demand more funding, more clinical trials, more options for families like ours.
Brodyn has already proven that he is stronger than the odds. With your help, we can give him—and all children with NKH—a future filled with possibilities!
Join Us in the Fight Against NKH
Our family has walked this road for 15 years, and it has been paved with heartbreak, but also with hope. If we can make a difference in even one other child’s life, it will all be worth it.
This Rare Disease Awareness Month, stand with us. Share Brodyn’s story. Help us fight for a better tomorrow.
For more information on NKH and how you can help, visit NKH Crusaders.
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