Remembering Olivia: A small girl brings together a large community in Bluffton

August 1, 2010 

From left, Sean Custer looks at his daughter Gabriel, 10, while talking to fellow Pinecrest residents Cristina and Ron Kirby during a benefit for the Custer family, which lost their other daughter, Olivia, 4, to mitochondrial disease July 2. The event was organized by the Pinecrest Property Owners Association at the Pinecrest pavilion to raise funds to help defray expenses incurred by the family during Olivia’s long illness.

JAY KARR

During a nearly five-year battle against a rare disease, Olivia "Livi" Custer and her family never wavered in their fight.

Livi Custer of Bluffton was just a couple months old when her parents, Tracy and Sean, noticed something was wrong.

"She had severe (acid) reflux, little to no muscle tone and couldn't digest food," said Tracy Custer. "She never did walk."

It took 20 months of many specialists and scores of tests before doctors arrived at a diagnosis: mitochondrial defect. In Livi's case, her mitochondria, tiny structures within cells that help the body use food for energy, didn't work properly. Mitochondrial disease can cause nerve damage, seizures, stroke, muscle wasting, blindness, deafness and more. There is no cure.

Despite her family's resolve and cutting-edge medical treatment -- Livi was the first to test a new drug for her condition developed from her own cells -- Olivia Custer died July 2, just11 days before her fifth birthday

In honor of her memory and to help the Custer family, friends, schoolmates and community members gathered Sunday afternoon at a benefit hosted by the Pinecrest Property Owners Association.

"They've had so many ups and downs," said Margaret Debethizy, fellow church member and bereavement counselor at St. Gregory the Great Catholic Church. "We've cried together. Tracy is still having a difficult time. We haven't forgotten them and we never will."

Though much of her life was spent in hospital rooms, the youngster had an uncanny ability to bring happiness and inspire those around her, said Sean Custer.

"Livi touched so many people's lives," he said. "It's definitely tough. It's tough to talk about. But she battled her illness almost her whole life, and she still blessed everyone who knew her."

When Livi could, she attended Okatie Preschool. Her 10-year-old sister, Gabrielle, "Gabi," attends St. Gregory the Great Catholic School.

Mike Palermo, president of the association, said the family's neighbors and other community members wanted to do something to help offset the cost of the Custers' medical bills, which are still pouring in.

"Just last week, I got bills from 2007 from Memorial Hospital in Savannah Hospital, where we went in the beginning before we knew what the problem was," Tracy Custer said.

One bill from Livi's last two-week stay at Children's Healthcare of Atlanta Pediatric Hospital was $60,000, she said.

About 200 people stopped by the event, which raised nearly $3,000, said Doug Smith, a Pinecrest POA board member.

Mike Silver, a Pinecrest resident, signed his new book "The Happening at Harbor Town," and will donate 25 percent of the book's sales to the fund, he said.

"They're a wonderful family," said Silver, a retired hospital administrator. "The medical bills are just staggering. We've seen what they've been through."

An extra strain has been the time Livi's parents had to take off from work to care for her. Tracy Custer returned to work last week as a bartender and server at Outback Steakhouse on Hilton Head Island. Sean Custer owns Sean Custer's Southern Sign & Awning in Bluffton

"My wife fought right alongside Olivia day after day. She never allowed her to give up," Sean Custer said. "Right now, it's really difficult for her. Taking care of Olivia was a full-time job."

Bluffton Police officers and Bluffton Fire District firefighters also attended the event and handed out educational flyers, red fire hats and coloring books.

During the little girl's illness, emergency responders had to visit the family's home in Pinecrest at least 10 times, Tracy Custer said.

"The firefighters have been great," she said. "Two shifts of them showed up at her funeral in their firetrucks and each wore a pink ribbon on their coats for her."

Custer said seeing the fire and EMS crews who treated his daughter at the benefit meant a "great deal."

"They are the most compassionate group of men I've ever known," Sean Custer added as he thanked one of the EMS technicians for his service.

"Our Bluffton community, and Pinecrest, our church community and all the volunteers have been so amazing. No questions asked," he said. "We're so blessed to live where we do."

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