South Shore Rotary steps out in support of 12-year-old with rare disease
Updated Mar 13, 2021;
Posted Mar 13, 2021
Princes Bay resident Drew Denmark, 12, who suffers from Phelan Mcdermid Syndrome, recently received support from the South Shore Rotary Club. From Left: James Young, Joseph Torres, Dean Balsamini Sr., Debra Denmark and Drew Denmark. (Courtesy of Debra Denmark)
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STATEN ISLAND, N.Y. Over the years, Princes Bay resident Drew Denmark, 12, who suffers from Phelan Mcdermid Syndrome, has received support from a myriad of Staten Islanders and local businesses in the quest to raise money for research about the rare disease.
And now he has the support of the South Shore Rotary Club.
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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.