When two-year-old Kole Pearson failed a series of routine newborn hearing tests, nothing could have prepared his parents for the deadly – and incurable – diagnosis their son would receive only months later.
Indeed, medics initially suspected Kole, from Ellesmere Port in Cheshire, to be autistic or have Global developmental delay (GDD) after his mother, Beth Gordon, flagged his missed milestones and noted other symptoms like stimming and a floppy neck.
However, following a third failed hearing test, 33-year-old Ms Gordon recalled watching a TikTok video of a child with Sanfilippo syndrome – a rare, neurodegenerative disorder – and had a ‘motherly
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