WEST SUNBURY — Olivia Bartholomew of West Sunbury has a whole “pride” of supporters in northern Butler County. They help her cope with a very rare form of mitochondrial disease that disables her body’s ability to produce energy.

Recently “Olivia’s Pride,” a team of more than 45 relatives and friends, participated in the United Mitochondrial Disease Foundation’s Energy for Life Walk. The team raised more than $4,000 for research to find a cure.

“We have mitochondria that are part of every cell,” said Chuck Mohan, CEO and executive director of the United Mitochondrial Disease Foundation in Pittsburgh. “Its main job is to produce energy for the body.”

“Whenever they are not functioning properly the organs of the body aren’t receiving sufficient energy and cannot function as they are supposed to.”

Dassa McKinney Elementary School students, teachers, staff and bus drivers know about Olivia’s illness. They showed their support for her on the last day of school by wearing yellow and white Olivia’s Pride T-shirts.

Olivia will turn 12 this month.

Her parents, Keith Bartholomew and Sherry Bartholomew, both of West Sunbury, knew for several years that their daughter was small.

“Nobody really picked up (on the disease) until she got real sick. She got a stomach flu that put her into Children’s (Hospital),” Keith Bartholomew said. “She ended up staying a week. The very last day someone suggested a brain scan.”

Doctors discovered an abnormal portion of her brain. She was 7 years old.

The Bartholomews learned Olivia has mitochondrial disease. A year later, they received a more specific diagnosis of Kearns-Sayre Syndrome.

“At that time, she was one of 247 known cases,” Bartholomew said.

“It is a multisystem disease,” Mohan said. “Those organs that require the most energy are the ones that are most adversely affected.”

“Someone with a mitochondrial disease might, just by getting up and walking across the room, feel as though they just ran a marathon,” Mohan said.

He said the 250 primary mitochondrial diseases identified disable the body’s production of energy. They also cause other diseases.

Alzheimer’s and Parkinson’s diseases, autism, cortical blindness, cortical deafness and diabetes have mitochondrial-related components.

Olivia’s parents and their families care for her at home.

“About every two hours she needs something, or maybe three if she’s doing good,” Bartholomew said.

“She is very tiny,” Holly Collins, Olivia’s aunt, said. “When she walks, she has the tremors and shakes of the disease. She has tunnel vision.”

Collins said Olivia has a pacemaker. She also has type 1 diabetes with very unstable blood sugar levels.

“This year going into school was rough because the kids are so big,” Bartholomew said. “She’s old enough to pick up on what she can’t do.”

Olivia will be in sixth grade in the fall.

“There’s constantly someone watching out for her at the school,” Collins said. “These kids rally around her.”

Collins, who works at the school, and Courtney Collins, her daughter, had T-shirts made with Courtney Collins’ design of a lion in a tree.

“I had 24 sponsors,” Holly Collins said. “We were just grateful that they were willing to raise money for the team and the foundation.”

More than 280 shirts were sold.

“The community rallied around her. They knew the walkathon was coming,” Collins said. “They knew the money was going to the foundation in hopes of finding a cure for her.”

“I can’t thank them all enough,” Collins said

Bartholomew said Olivia needs a lot of encouragement.

“Everything’s a pep rally with her,” he said. “There are new battles that arise every few months.”

He said that even with the challenges, staff at Dassa McKinney want Olivia to continue at the school.

“Olivia has a lot of obstacles in life but is a very lucky little girl to have so many people care and show their support for her,” Sherry Bartholomew said. “They really are a caring bunch and the school could not have done any more to support her.”

Olivia is participating in a study of a new medication. Keith Bartholomew said it has improved her energy. Olivia’s pacemaker also has helped.

“We’ve had some prayers answered in the past month or two. We jumped ahead. To me that’s everybody praying for her. You go with that and you have to run with it,” he said.

Visit www.energyforlifewalk.org to donate to the team “Olivia’s Pride.”