Monday, May 9, 2011

New Jersey is running for awareness

Heather O'Connell's daughter, Delaney, was a year old when she was diagnosed with Williams syndrome, a genetic condition often characterized by cardiovascular disease, learning disabilities and developmental delays.

"She first walked when she was 21 or 22 months old," O'Connell said of Delaney. Earlier this month, as a member of the YMCA's Special Kids Organized Recreation team, the girl who didn't walk until she was nearly 2 years old won the gold and two silver medals at the trials for the Special Olympics Summer Games.

Delaney, now 8, will also join her mother for the NJ Walks for Williams and 5K Run at 9:15 a.m. Saturday at Veterans Park, Kuser Road entrance, Hamilton. A one-mile awareness walk and fun run will begin at 10 a.m., with a USATF-NJ Grand Prix Event at 10:30 a.m.

O'Connell, a 39-year-old Pennington resident who serves as the regional chairwoman of the Williams Syndrome Association, organized the walk last year and raised $5,000 with the help of about 200 participants, including kids.

This year, her message is that awareness and funding for Williams syndrome help support not only those living with the condition, but also their families and educators in the community.

"Awareness in the community is so important because there are so few people living with Williams," she said. Nationally, 30,000 people have it.

"Others should understand why our kids are so social and so loving that they may go up to a stranger and give a stranger a hug," O'Connell said.

Delaney learns social skills from her parents and her teachers, but she can't control her impulse to approach strangers for friendly conversation.

"I am trying to let her know that not every stranger wants to have a conversation with a cute little girl," she said.

Williams kids are inquisitive and sweet, yet sometimes they feel a level of anxiety about situations that "puts their brain in overdrive," she said. "They are just so intrigued and interested with other people, who they are and what they are about. It's not a bad quality, she just needs to know how to use it properly," O'Connell said.

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