On a humid Wednesday afternoon, 7-year-old Spencer Holt plays football with his dad and his older brother.

"Throw it to bubby," Spencer's dad, Larry Matthews, calls out.

Spencer tosses the football to his brother, Jaiden.

"Hmph!" Spencer grunts as he chucks the pigskin across the lawn.

That day was a good day for Spencer. He was full of energy as he played with his brother and laughed with his cousin.

There was nothing to remind the family of the battle inside Spencer's small frame.


(Amy Mariani, Staff)

"When Spencer is having a good day, he looks like an average kid," said Cher Holt, Spencer's mom. "Like nothing is wrong with him. But, you never know what someone faces behind closed doors."

Behind those doors, Spencer faces a litany of problems. They all stem from his rare cellular disease called Mitochondrial neurogastrointestinal encephalopathy, or MNGIE.

According to the National Institute of Health, there are currently only 70 documented cases. The MNGIE affects Spencer's organs — specifically his intestines. He can't eat real food and gets all of his nutrients intravenously through Total Parenteral Nutrition.

There's even a special refrigerator in the garage filled with bags of clear liquid.

"If it wasn't for TPN," Cher said, before stopping. "Kids that co-depend on TPN — it'd be very hard for them to live."

The root of MNGIE is in the mitochondria of the cells. Mitochondria are responsible for creating energy needed by the body to grow and sustain life. When the mitochondria fail, energy isn't produced and the body can't sustain itself.

Spencer's body is shutting down. The MNGIE gives him seizures. He sometimes will sleep for days at a time. There's not much the family can do, either.

"We try to make him comfortable and treat his symptoms because there's no cure," Cher Holt said.

Kids like Spencer rarely live into their teens.

"We just go day by day," his mom said. "We don't know what the future holds. His new doctor that he sees in Orlando is worried that once he has a big seizure, that he’ll never come out of it."

Spencer's brother, Jaiden, does his best to support his little brother, but Jaiden wishes he could do more.

"I'd die for him," the 11-year-old said. "My one wish would to be for Spencer to be healthy and not go through sickness."

The family does everything possible to make every moment a memorable one. The community has helped, too. A local photographer threw a party for Spencer and raised more than $1,000.

The Pasco County Sheriff's Office even enlisted Spencer to help fight zombies after hearing the 7-year-old's favorite show is AMC’s "The Walking Dead."

Producers of the popular show heard about Spencer's valiant efforts against the walkers and sent him toys and swag from the show.

"It was all a blessing," Cher Holt said. "It means so much to me that people love Spencer and that Spencer has touched them all as much as he’s touched us."

The hope, Cher said, is all of the attention will turn the spotlight on Spencer's rare disease.

"I wish to spread his story and spread his smile around to make other people happy," she said. "And to get more research and more knowledge about the mitochondrial disease because it’s a nasty disease."