Rare condition leaves teen’s nerves without protective covering, slowing nerve signals
Like many rare genetic disorders, Jarren Ng’s condition has no cure.
When Dawn Lee was in her 29th week of pregnancy 16 years ago, she suffered a high fever and required an emergency caesarean section. Her newborn, Jarren, was placed in an incubator and on oxygen, where he was diagnosed with a genetic condition. Jarren struggled with low muscle tone, or hypotonia, and required breathing and feeding support.
Medical professionals initially suspected muscular dystrophy, but further tests revealed Jarren's unique diagnosis of congenital hypomyelinating neuropathy (CHN), a rare neurological disorder affecting peripheral nerves. CHN impacts nerve function by causing the protective myelin sheath to develop abnormally, leading to slowed or disrupted nerve signals.
This can result in muscle weakness, low muscle tone, and difficulty with breathing or swallowing. CHN affects fewer than one in a million live births and is difficult to detect, as symptoms can vary greatly. Jarren required immediate intensive care and ongoing medical intervention, including tracheostomy and a ventilator for respiratory support.
Despite the severe prognosis, Jarren has surpassed the average life expectancy for those with CHN and is now 16 years old. He has completed his N-level exams and aspires to a career in cybersecurity, aiming to protect Singapore from cyber threats.
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