Joel and Karen are parents of five children — three boys and two girls. Their journey began with their oldest son, Joas.
He was born healthy — or so they thought. His newborn screening was normal. But during his first winter, Joas was constantly sick. Ear infections. Respiratory problems. Endless doctor visits. At nine months old, he began rocking back and forth in his crib for nearly an hour at a time. Karen remembers lying awake in the dark wondering: “What is wrong with our son?”
At ten months, Joas had his first grand mal seizure. Hospital visits followed. RSV. Lung specialists. Neurologists. MRIs. EEGs. Eight medications. High doses that left him dizzy, moody, and unlike himself. And still…no answers.
After his third seizure and more inconclusive tests, they were sent home once again with medications but no clear diagnosis. The frustration grew. One day Karen said what they were both thinking: “There has to be a better way.”
For years they searched. They adjusted his diet. Reduced sugar. Tried natural approaches. Prayed. Joas never had another major seizure, but he continued to struggle with stomach pain, vomiting, and not feeling well. Something wasn’t right, but no one could explain why.
Then Elijah Was Born
In 2018, they welcomed another baby boy, Elijah. His newborn screening initially showed abnormalities, but repeat testing came back normal. They were told not to worry.
At eight months old, Elijah had his first seizure. Then another. And another.
One night, Karen picked him up when he was crying. He suddenly went limp. His breathing became shallow. He was unresponsive for nearly an hour.
Another night, his oxygen dropped to 66%. Ambulances. Emergency rooms. Spinal taps. CAT scans. MRIs. EEGs. Epilepsy, they were told. He would probably grow out of it.
But Joel and Karen had walked this road before. And they knew something deeper was wrong. After yet another hospital stay with no answers, their neurologist referred them to The Community Health Clinic in Topeka for genetic testing.
Finally — Answers
At The CHC, they met Dr. Z. From the very first visit, it felt different. She listened. She examined Elijah thoroughly. She explained genetics clearly. She didn’t rush.
For the first time, they felt truly heard. Six weeks later, the results came back.
Elijah was diagnosed with Propionic Acidemia (PA) — a rare genetic disorder that prevents the body from properly breaking down certain proteins. Without management, toxic buildup can cause seizures, strokes, and heart complications.
Then came another revelation. Dr. Z suspected Joas might also have PA. Testing confirmed it.
Joel and Karen are both carriers. Joas is affected. Their two daughters are carriers. One son is unaffected.
After years of confusion, everything finally made sense.
A Different Kind of Care
Today, both boys are carefully monitored. Their diets are managed. They receive specialized follow-up care from Dr. Z and the CHC team. But what stands out most to Joel and Karen isn’t just the diagnosis — it’s the compassion.
One snowy December day, when Elijah was sick, several CHC staff members came to their home to examine him.
“We are so very thankful to have a doctor and nurses that care,” they share. “They make it a pleasant experience to have children with a disorder.”
For this family, CHC isn’t just a clinic. It’s answers. It’s partnership. It’s hope.
“We want to thank God for His mercy and grace,” they say, “and thank Dr. Z and her staff for everything they do for our boys and for us. And we thank the community that supports the Health Clinic — without that support, it would be hard to afford the care our children need.”
