Hilton Head Monthly Magazine

Charity golf tournament pays tribute to Olivia Custer’s energy for life.

The inaugural Hope. Energy. Life. Charity Golf Tournament and Family Fun Day is set for Feb. 21 in honor of 3-year-old Olivia Custer.

Redefining hope toward a cure for mitochondrial disease, Olivia’s parents, Tracy and Sean Custer, are hosting the benefit to raise funds for research, education and treatment.

Every 30 minutes a child in the U.S. is born with mitochondrial disease. That’s one in 2,000, according to the United Mitochondrial Disease Foundation (UMDF), the largest non-government contributor funding research.

“We went a year-and-a-half with numerous diagnoses for Olivia, without having the ability to be directed in the right place,” said Tracy, who serves as a local ambassador for UMDF. “Now we can get with the medical community and be a resource for other families. So they won’t have to suffer not knowing, and (know) how to focus the energy where it needs to be focused.”

Mitochondrial diseases manifest themselves differently in every case, which can make early diagnosis challenging.

They result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90 percent of the energy needed by the body to sustain life and support growth.

When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more common.

Olivia wants to be just like her big sister, 8-year-old Gabi.

“She loves being around kids, and Gabi has friends over all the time, unless they’re sick,” Tracy Custer said. “We have to be so protective. Gabi’s friends are wonderful. They want to hold Olivia’s hands, hold her feeding tube, and help her move. She was never able to walk independently, we almost got to that point.”

“Olivia’s a beautiful girl, so happy and bright-spirited,” said her father. “And she’s a fighter. She’s gone through a lot and she keeps going. But these past two months, we’re starting to see a decline.

“Olivia is only with us today because of Tracy,” he said. “From day one, she has not let anyone give up on her. Because of her will and faith, she kept us going as a family. It comes down to that. That is the honest to God’s truth.

“I believe she’s an angel,” Tracy Custer explained. “People light up when they talk to her and see her. I just can’t give up on her. She’s my baby.

“This disease does not follow a specific course,” she continued. “The symptoms Olivia is now having show that it is progressing and she is exhibiting late-stage symptoms. But she has defied the odds with how well she’s done. Her doctors are particularly interested in her type of mutation, and we hope that research will provide some answers in battling mitochondrial diseases.”

Raising awareness and redefining hope is the charity event’s mission.

“This is something we wanted to do – for research, for Olivia, and for the community which has been so supportive,” her parents said.

The 18-hole championship golf tournament will be at Island West, with a catered Southern barbecue dinner under a heated tent by One Hot Mama’s, along with Kidzplay Fun Zone bouncy houses, the magic of Gary Mauer, raffles, a silent auction and live music.

RMC Resort Services is the raffle sponsor, offering a full luxury vacation at Shipyard properties. Event sponsorships are still available. Auction items include premier golf packages, fine dining, spa services and more.

“Each golf team will play in honor of mitochon-drial patients,” Tracy Custer said. “We hope to do this every year. We are trying to put together the faces of Mito disease. We’re putting our hearts and energy into this to benefit children and adults.

“This may be the last thing we can do for Olivia, but we will continue on in her honor,” she said.

Tickets are $125. Sign up by calling the Custer family at (843) 368-7097 or visiting Hopeenergylife.org.
For more information about United Mitochondrial Disease Foundation visit umdf.org or contact Tracy Custer, UMDF Bluffton ambassador, at (843) 368-7097.

HOPE. ENERGY. LIFE. CHARITY GOLF TOURNAMENT AND FAMILY FUN DAY