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NBNNEWS.COM.AU | Delivering the highest quality local news, sport and weather, NBN News has played an important role in the lives of people across northern New South Wales for decades. Our talented team of journalists, producers and camera operators bringing you the stories that matter, seven days a week, 365 days a year, across both television and digital.
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Call it motherâs intuition, but Georgie Bennett knew straight away that something wasnât quite right with her firstborn, Holly.
âShe wasnât meeting any of her milestones; she didnât roll when she was supposed to and she couldnât sit like the other babies,â says Georgie. âWhenever we sought medical advice, however, we were simply reassured that since Holly was born at 33 weeks, she would just take a little longer to catch up.â
An older photo of Georgie Bennett and her daughter Holly, who has Phelan McDermid Syndrome.
While Holly failed to flourish, Georgie continued her fight for answers and when her toddler was 18 months old, the Bennett family finally received a formal diagnosis for Holly: Phelan McDermid Syndrome, a rare genetic condition caused by a deletion or other structural change of the terminal end of chromosome 22 in the 22q13 region, or a disease-causing mutation of the SHANK3 gene.