accidental bungee cord fish-hook to the mouth led to a sanfilippo diagnosis for tennessee boy kiernan o'neal

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When Tennessee police officer Shaun O’Neal’s youngest son Kiernan (age 5 at the time) accidentally fish-hooked a bungee cord through his own bottom lip while taking a drive with him in his pickup truck, Shaun had no idea it was ultimately going to lead to a devastating Sanfilippo Syndrome diagnosis for his son. By pure coincidence, one of the nurse practitioners at the doctor’s office (where they took Kiernan to get his mouth checked out the next day) happened to be knowledgeable of MPS disorders in general (of which Sanfilippo is one), and she suggested to Shaun that they take Kiernan for genetic testing because, as she explained to him, Kiernan's physical features and oral fixation seemed spot-on for an MPS disorder.  The O'Neals took the nurse practitioner's advice and got Kiernan genetic tested.  And when the geneticist ultimately came back with a diagnosis of Sanfilippo Syndrome a few weeks later, no Googling of 'Sanfilippo Syndrome' was needed. That’s because the son of one of Shaun’s high school classmates - a little boy by the name of Lucas Hembree (one town away) - had just passed away (40 days prior) from Sanfilippo Syndrome.  The O’Neal family had closely followed Lucas’s story.  “We knew instantly that this diagnosis was really bad”, said Shaun.

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