Silver Spring family raises $18,000 for son’s rare syndrome -- Gazette.Net







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This story was corrected on Oct. 10, 2012. An explanation follows the story.

Edmund Picciuto is a lively, fun 3-year-old who just started preschool and loves playing with toy cars and trucks, annoying his brothers and creating “postmodern compositions” on the piano.

“He’s just Mr. Social Pants,” said his mom, Elizabeth Picciuto.

Edmund also has 5p- syndrome, or cri du chat syndrome, which affects 1 in 50,000 births, and is not yet able to walk or say more than a few words.

“He can understand a lot more than he can say,” Elizabeth said, and can move around quite a bit in his gait trainer.

To raise money and awareness of the syndrome, Elizabeth and her husband, Vincent, both of Silver Spring, held a fundraiser on Saturday to benefit the 5p- Society. The event, held at ArtSpring in Takoma Park, drew about 60 people including friends, family, Edmund’s teachers and students from the University of Maryland, College Park, where Elizabeth is a graduate student in philosophy.

Hoping to beat the $20,000-plus amount raised from a similar event two years ago, the family has so far collected about $18,000 from the event’s auction, portions of sales from ArtSpring and various donations, and will continue to accept donations.

The auction included items such as a signed limited edition Stephen King novel and the chance to be a character name in a Susan Isaacs novel.

The money raised will go to an annual national conference the 5p- Society holds in part to connect parents with genetic researchers studying the rare syndrome as well as with other parents.

Many people from the community, including friends, family and local businesses pitched in to help, Elizabeth said.

“It was just a fun, charming event,” she said.

Elizabeth said that, in addition to raising funds and awareness, the family also wanted the event to be fun, despite the gravity of Edmund’s syndrome.

“I love my kid, and he makes me happy,” she said.

In an earlier edition of the story, cri du chat syndrome was incorrectly spelled as cris du chat syndrome. The syndrome was also incorrectly referred to as a disease.