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Last month, we had a very special visitor to theCHIVE HQ. HIs name was Simon. He and his mother, Alina Gorniak, had arrived to talk to me about something called Sanfilippo Syndrome. It’s a degenerative disorder in kids caused by a missing enzyme. As a result, toxic storage material builds in the brain. The result is an accumulation of toxins that assault Simon’s brain every second of the day, causing widespread damage. The most immediately recognizable of which is memory loss.
Sanfilippo Syndrome is Alzheimers for children.
When the pernicious disorder becomes fully degenerative, Simon will be unable to walk, talk, or feed himself, and seizures, dementia, and death will follow. It is 100% fatal.
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