Fonte: New York Post
A desperate Long Island dad is begging US lawmakers to restore long-stalled federal money to continue funding the only lab he says is capable of treating his 5-year-old son’s extremely rare genetic disorder. Andrew Jedlicka, a New York University business professor and father of three from Merrick, has been taking his youngest child to the center in Long Island City, Queens, for the past five months to receive a new experimental treatment he said could fully cure his son. The boy, whose dad asked that his name be withheld, was diagnosed last year with KBG syndrome, a rarely seen genetic disorder linked to developmental delays, speech issues and seizures.
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