Fundraiser Held For Ronkonkoma Girl with Rare Genetic Condition

The community rallied around Ronkonkoma's own , 6, and her family for a fundraiser held last week at . 

It was to raise money for Sanfilippo syndrome, the rare and fatal genetic condition in which Emily is afflicted.  Funds generated will go to Team Sanfilippo, a non-profit medical research foundation started by a group of parents with the mission of funding potential therapies, and cures for this little known malady.

Sanfilippo syndrome is an inherited disease of the metabolism that belongs to a group of diseases called MPS.

The daylong event featured plenty of activities for the whole family to enjoy.  There was a moon bounce, face painting and balloon animals, as well as raffles, a yard sale, plant sale, bake sale and more. 

Music was provided by North's Tri-M Music Group, The Sachem North Drama Club, students and After Hours, an energetic alternative rock band from Sachem.

Even the local hotdog vendor was selling refreshments with all proceeds going to the cause.

"It's great. We had dozens of people help set up, and at least 10 Girl Scout troops," said Emily's dad, Kevin O'Connor.

The entire family was deeply moved by the overwhelming show of support.

"I'm trying not to cry today. It's absolutely amazing to see that the community could come together like this," said Emily's mother, Danielle O'Connor. "I was not expecting the amount of people to help who did. I'm completely at a loss for words. You hope if something like this happens, people will come together, and they did. It's very heartwarming."

Several students from Sachem pitched in to make the day a success.  President of the Sachem High School North Freshman Class Caila Hendrickson was on hand making sure that everyone bought a purple bracelet to promote Sanfilippo awareness, Ashley Miskovsky dressed up as a clown and made balloon animals and Mike Schulz has been tirelessly volunteering and raising awareness of the condition since Emily was first diagnosed a year ago.

Danielle O'Connor pointed out that May 15 is MPS Awareness Day, and that all across the United States many similar fundraisers were taking place, in solidarity of the shared plight that so many suffer in silence.

"We have to be proactive, because I can't survive if I'm not," said Danielle. "It helps; it's a way to shoot it down, to do something positive instead of negative.  It helps you get through the day."

To find out more about Emily and her illness go to her community Facebook page called "Emily's Dance, Our Baby's Life with Sanfilippo Syndrome."

The family would like to thank the following companies for helping out: Dream Believe Achieve Dance Center, Crazy Rhythms Dance Center, Ginos Pizza, Stacies Bagels, Bargain Dollar, Slater's Pharmacy, Rainbow Deli, Gold Medal Gymnastics, Chinese Buffet on Portion, Retro Fitness, St. Regis Knights of Columbus, and Paul Stallone Photography.

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