Child living with Trisomy 18 receives special surprise

Child living with Trisomy 18 receives special surprise

WILLIAMSTON, MARTIN COUNTY - The family of a Martin County girl living with Trisomy 18, a lifelong genetic disorder, received a much needed surprise Saturday. Hundreds of bikers rode near Williamston Saturday morning to help raise money for a handicap accessible van to give to Harlie Pilvelis.

Graceway Ministries Pastor Jody O'Neal helped organize the Hope for Harlie benefit.

"Every time Harlie leaves the house she needs to be a in a medical transport vehicle," O'Neal said.

Harlie's mother, Melody Kinney, said the money raised at the event would go towards a handicap accessible van for Harlie. However, O'Neal surprised Harlie's family by presenting them with a key to a van at the event.

"I was shocked. I didn't think it would happen. I'm so glad that it did though, because every time we had to leave we had to leave Harlie at home," Kinney said.

Kinney said she's excited to be able to take her daughter on family trips in their new van.

Harlie needs all the help and love she can get. Trisomy 18, also known as Edwards syndrome, is a genetic disorder where you have too many chromosomes. Only 10-percent of children with Trisomy 18 live past their first year, according to the Trisomy 18 Foundation. Harlie is eight and still smiling.

NewsChannel12's Juliana Valencia first met Harlie in March when her mother said they'd lost their Medicaid benefits. After Harlie's story aired, Eastern Carolina Behavioral Health in Greenville contacted our newsroom. We connected ECBH with Harlie's family and they were able to help get Harlie's Medicaid benefits reinstated.

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