Elijah’s Story
Elijah was born with a rare genetic disorder called Non-Ketotic Hyperglycinemia (NKH), a condition that affects the body’s ability to properly process glycine. Like many children diagnosed with NKH, we knew within the first few days of his life that something was wrong.
Shortly after birth, Elijah went into a coma and began having seizures. We were airlifted to a larger hospital where newborn screening results revealed dangerously elevated glycine levels. It was there we received a temporary diagnosis of NKH.
What followed were some of the hardest weeks of our lives.
We spent three weeks in the NICU hearing words no parent is ever prepared for, discussions about palliative care, recommendations to withdraw life support, and devastating predictions about Elijah’s future. Doctors prepared us for the possibility that he would never wake up.
But even in those early moments, something about Elijah felt different.
There was a quiet fight in him.
After meeting with several people helping us navigate impossible decisions, I finally stopped and asked God one simple question:
“What do You want me to do?”
I felt Him answer clearly:
“Fight for him.”
At the time, I was still a very young Christian. Sitting beside Elijah’s hospital bed, I prayed prayers I can only believe God gave me the strength to pray.
The next day, Elijah woke up.
Eventually, we were able to go home carrying both fear and hope, celebrating even the smallest milestones that once felt impossible.
Over the next year, I continuously prayed for wisdom regarding Elijah’s medications and care. One by one, under medical supervision, medications began being reduced and removed.
By the time Elijah was about a year and a half old, only one medication remained. During an appointment, a geneticist warned us:
“Surely if you take him off this medication, he will die.”
That moment shook me deeply.
I prayed again, asking God why this medication still remained. What I felt in my spirit was unexpected:
“You do it.”
I struggled with fear and disbelief. Surely I had heard wrong. Surely God understood what the doctors were saying.
Searching for confirmation, I opened my Bible and landed on the story of Abraham being asked to sacrifice Isaac. The weight of that story overwhelmed me because I knew exactly how Abraham must have felt.
I closed the Bible, convincing myself it had to be coincidence.
A week later, still wrestling internally, I opened the Bible again (intentionally avoiding the Old Testament this time) and once again landed on the story of Abraham and Isaac.
Still uncertain, I opened the Bible a third time with my eyes closed and pointed to a verse. When I opened my eyes, I read:
“If you love your children more than Me, you are not worthy of My kingdom.”
I obeyed.
And Elijah lived.
Not long after, I discovered that Ceylon cinnamon is considered a natural glycine reducer, and that discovery led us into a much deeper holistic and functional health journey. Since then, Elijah has received frequency therapy and a variety of functional and holistic supports. Today, nearly 90% of Elijah’s daily care is centered around a holistic and functional approach to supporting his body.
Elijah’s journey has not been easy. We have experienced hospitalizations, seizures, developmental delays, setbacks, fear, exhaustion, and uncertainty.
But that is not what defines him.
What defines Elijah is his joy.
His determination.
His patience.
His resilience.
His ability to keep experiencing life fully despite the obstacles in front of him.
Elijah loves nature… the sounds, the movement, the textures, the wind on his face, the uneven ground beneath his wheels, and the simple beauty of being outside. He loves connection, adventure, and experiencing the world around him in his own unique way.
One of the most incredible things about Elijah is the patience he shows the people caring for him. While we continue learning how to meet his needs, communicate with him more effectively, and help him access the world around him, Elijah continues showing up every day with quiet perseverance and strength.
He has taught us more about love, endurance, perspective, and faith than we could ever put into words.
Today, Elijah is 8 years old.
Elijah’s Mission was created to give Elijah the legacy he deserves and the voice he never had. What began through survival slowly became purpose.
Through the products, resources, and projects connected to Elijah’s Mission, our hope is not only to help provide Elijah with a better quality of life, but eventually to support and encourage other families navigating disability, caregiving, and medical complexity as well.
This is only the beginning.
And we truly believe the story being written through Elijah’s life is far bigger and more beautiful than we could ever imagine.
Contact Us
If our story impacted you and you would like to talk to us, you can email us at
meganhopeofficial@gmail.com