Rare disorder affects teen’s nerve signals between brain, spinal cord and body

By the Editorial Team · Sunday, October 18, 2026

Sixteen-year-old Jarren, diagnosed with the rare congenital hypomyelinating neuropathy (CHN) at birth, has defied medical expectations by surviving well beyond infancy despite severe neurological impairments requiring ongoing respiratory and feeding support. His progress highlights the importance of multidisciplinary care and regular health assessments in managing rare disorders with variable severity, as he prepares to pursue a cybersecurity career at the Institute of Technical Education.

When Dawn Lee experienced a high fever during her 29th week of pregnancy 16 years ago, it led to an emergency caesarean section and the premature birth of her son, Jarren. Soon after birth, Jarren was admitted to the neonatal intensive care unit with a diagnosis of a rare genetic disorder affecting his nerve function.

Jarren was found to have congenital hypomyelinating neuropathy (CHN), a very rare neurological condition that disrupts the signals between the brain, spinal cord, and body. CHN results from abnormal development of myelin, the protective sheath around peripheral nerves that facilitates rapid and efficient nerve signal transmission. When myelin formation is impaired, nerve signals slow or become disrupted, causing symptoms such as muscle weakness, low muscle tone, and difficulties with breathing and swallowing.

At birth, Jarren exhibited hypotonia—a condition of reduced muscle tone—and required assistance with feeding and respiration. Initial tests suggested muscular dystrophy, but further investigations at KK Women’s and Children’s Hospital (KKH) including blood work, brain imaging, muscle biopsy, electromyography, nerve conduction studies, and genetic testing eventually pointed to CHN. Despite extensive genetic screening, no specific genetic mutation was identified in his case.

CHN is an extremely rare disorder, affecting fewer than one in a million live births worldwide. There is currently no routine prenatal screening for the condition due to its rarity and overlapping symptoms with other neuromuscular disorders. Severity can vary widely, with some affected infants showing clear signs shortly after birth and others presenting more subtle symptoms that may delay diagnosis.

Jarren’s medical care has been comprehensive and multidisciplinary. Due to severe feeding difficulties, he was tube-fed through a nasogastric tube until age two, at which point a percutaneous endoscopic gastrostomy (PEG) feeding button was implanted. He also underwent a tracheostomy and now depends on a ventilator for respiratory support, which is closely monitored and adjusted via annual sleep studies. His ongoing care team includes specialists in physiotherapy, occupational therapy, speech and language therapy, dietetics, and respiratory medicine.

Senior consultant Cristelle Chow, who oversees his general pediatric care, highlighted the importance of regular assessment in adapting to Jarren’s evolving health and mobility needs. Interventions include motorized wheelchair use and nocturnal ventilator support, alongside routine care such as vaccinations, schooling accommodations, and psychological support.

While medical literature often indicates that infants with severe CHN may not survive past three years of age, Jarren has surpassed these expectations. Now 16, he recently completed his N-level examinations and plans to attend the Institute of Technical Education to pursue a career in cybersecurity. “I am looking forward to making new friends at ITE next year,” he said, embodying resilience in the face of a challenging diagnosis.

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