When Jordan and Chris Kruse welcomed their third son, Pruitt, into the world on May 17, 2024, their family was complete. The delivery went smoothly, and the days that followed were filled with joy and celebration. However, their happiness took an unexpected turn just days after bringing Pruitt home when the newborn began showing signs that something was wrong.
“The first hours after bringing Pruitt home were a whirlwind of emotions,” recalls Jordan. “Everything was going fine at first. We even had family over to meet him. We spent the night cuddling on the couch as a family of five for a movie night.”
Later that evening on May 19, the Kruses took Pruitt to acute care just before they closed.
“At the hospital, we were instructed to bring him in if he hadn’t urinated within 12 hours after his circumcision,” said Jordan. “He was showing no signs of distress at that time, but we were sent home assured that he was fine, and they would check in with us in the morning to see how Pruitt was doing.”
Jordan and Chris had no idea just how fitting their choice of name would be.
“Pruitt means ‘brave little one,’ and it clearly fits him perfectly,” Jordan shared.
In the early hours of May 20 everything changed for the Kruses.
Pruitt began refusing to nurse and made uncomfortable grunting noises, prompting a frantic trip to the emergency room. At first, doctors suspected a bacterial infection, but after 24 hours of cultures coming back negative, the situation grew more urgent. On May 22, the medical team checked Pruitt’s ammonia levels, revealing they were alarmingly high—a sign of a genetic condition known as Ornithine Transcarbamylase (OTC) Deficiency.
During the testing and waiting periods, the Kruses found support from family and friends.
“It was moments filled with anticipation, dread, and a weight of uncertainty. A portion of the time was spent answering questions about the pregnancy, the delivery, and our past medical history to help build a profile on Pruitt to help determine what was wrong with him,” said Jordan. “When we weren’t speaking with medical personal, we sought support from family and friends during this time.”
On May 24th, Pruitt was diagnosed with OTC Deficiency.
“I remember feeling a rush of emotions—shock, confusion, and an overwhelming sense of disbelief. We assumed that he had some type of bacterial infection, so when we learned it may be genetic, we were surprised,” said Jordan. “Given that Pruitt’s newborn screen came back normal, his brothers were healthy, and neither Chris or I had any health issues it didn’t really make sense at the time. It just felt like another test that would be crossed off the list and that it wouldn’t be something genetic.”
For Jordan and Chris, learning that their newborn son had OTC Deficiency—a rare X-linked genetic disorder that impairs the body’s ability to remove excess ammonia—was overwhelming. Excess ammonia is toxic to the body, causing progressive health issues.
“The news felt surreal and a wave of anxiety and fear took over. The medical jargon and the gravity of the situation made it difficult to fully grasp everything at once,” said Jordan. “Thoughts about potential complications, treatments, and how this would impact Pruitt’s life, and our family started to flood in.”
On May 28, Pruitt underwent his first MRI, which revealed concerning bright spots on his brain. The neurologist explained that while the spots were troubling, infant brains can sometimes regenerate. On June 2, Pruitt was finally able to come off the breathing tube, and his parents were able to hold him again. However, a follow-up MRI on June 6 showed no signs of regeneration, and additional areas were affected. A third MRI, conducted a month later, revealed extensive supratentorial brain injury.
On June 10, Pruitt’s older brothers, Paxton and Pryor, were tested for OTC Deficiency, and both results came back negative. Throughout Pruitt’s hospital stay, he required dialysis several times while doctors worked to establish a stable nutritional plan. Eventually, they found a feeding regimen and a combination of medications that worked for him. After moving from the PICU to the regular pediatric floor for continued monitoring and stabilization, Pruitt was finally discharged from the children’s hospital on June 28.
On August 27, Pruitt underwent GJ surgery, and a permanent port was placed in his chest. This port enables medical staff to draw labs more easily and administer Ammonul swiftly to reduce ammonia levels if they rise. OTC Deficiency demands strict dietary management and medication to keep ammonia levels in check, as even slight fluctuations can be life-threatening. Pruitt will be closely monitored with weekly checks on his ammonia levels, amino acids, and weight to ensure that his feeding and medication regimen remains effective.
“Managing a rare genetic condition like OTC Deficiency is an ever-evolving process,” Jordan explained. “Pruitt follows a strict low-protein diet, and his intake of specialized formulas and supplements is closely regulated by his dietitian and genetics team to control his ammonia levels. He also takes several medications, including ammonia-scavenging agents that help lower ammonia in his blood. We have emergency protocols in place to prepare for emergency situations, such as hyperammonemia, which may require immediate medical interventions.”
While the future remains uncertain, the Kruse family remains hopeful and committed to navigating the challenges of OTC Deficiency with resilience and love.
Jordan’s advice for families facing similar challenges?
“Facing a rare genetic condition in a family can be incredibly challenging, but I would encourage families in similar situations to celebrate the small victories, educate themselves on the condition, build a support network, prioritize your family’s well-being, advocate for your child, and embrace the journey with compassion and resilience,” said Jordan.
As Pruitt’s journey unfolded, the Kruse family found an unexpected source of strength: the unwavering support of their community in Lennox.
“We are deeply grateful for the incredible support and kindness the community of Lennox has shown our family during this challenging time,” said Jordan. “The generosity and compassion have been a source of comfort and strength for us, and we can’t thank everyone enough for standing by us. The support has made a world of difference, and we are truly blessed to be part of such a caring community.”
A series of fundraisers have been organized to help cover Pruitt’s mounting medical expenses. One upcoming event is “Pruitt’s Fall Festival,” scheduled for October 6 at the Lennox High School Cafetorium. This family-friendly event will feature live music, contests, kids’ activities, and a pork BBQ dinner. Mogen’s Heroes will provide music with an open dance floor from 5 p.m. to 6:30 p.m. Kids’ activities include a fish pond, arts and crafts, story time, face painting, ring toss, puzzles, fall photos, games, and more. There will also be an apple pie baking contest, hula hoop contest, and waltz and jitterbug dance contests, along with raffles. A link can be found at left with more information. A pork BBQ dinner will be served from 5 p.m. to 6:30 p.m. Proceeds will go to the Kruse family to help support Pruitt’s medical expenses. For more information about Pruitt’s Fall Festival or how you can contribute, please contact Second Reformed Church at 605-647-5417 or email secondlennox@iw.net.
Another fundraiser will take place during the Tri-Valley football game on October 18, hosted by the Lennox FCCLA. T-shirts are being sold to help raise funds, with a link available below.
As Pruitt’s story continues to unfold, one thing is certain: he won’t face it alone. The community’s outpouring of love and support will remain a vital part of the Kruse family’s strength in the days ahead.
You can continue to follow Pruitt’s story on Carinbridge. A link can be found at left.
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