Nate Ferrell’s sister Abby thinks he should be a narwhal for Halloween. Nate laughs and dances in the seat of his mom’s Honda Pilot to a song about the horned sea animal. The 11-year-old picks his nose.
Nate’s mom, Amber Ferrell, 37, hands him a Chick-fil-a meal from the drive-thru. Nothing seems out of the ordinary.
Moments later, an “Oh, crap” is heard from the backseat.
Nate has poked a hole in his styrofoam cup, and his drink is flowing all over the moving car. He frantically sticks a straw into a puddle of lemonade and drinks from the cup holder.
His mother is mortified — and the cameras have captured it all.
Nate is more than just a kid who spills lemonade. Shortly after his first birthday on Feb. 24, 2008, Nate was diagnosed with mitochondrial disease and started receiving treatment at UF Health Shands Children’s Hospital.
Children’s Miracle Network Hospitals hired a camera crew to follow the Ferrells and nine other families in October for an 11-episode unscripted series called “Real Moms.”
According to Amber, the group of moms in the show share one common bond: raising a child with an incurable disease and hope to serve as a resource to other moms who can identify with their stories.
Nate said his favorite part of being in a reality show was the craziness of cameras following him in his home, car and at the hospital.
“It’s chaos, but it’s kind of fun,” Nate said.
Chaos entered the Ferrell family’s life well before the camera crew arrived. Since his diagnosis, Nate has undergone approximately 25 surgeries and clinical trials.
“I have seriously lost count,” his mom said.
Mitochondrial disease does not have a cure.
Nate’s body doesn’t have enough energy to operate his organs as the mitochondrion in his cells are defective. Amber said her son’s form of mitochondrial disease is progressive. Nate has eight specialists at their local hospital who help him combat the degenerative disease. He’s required to wear an oxygen mask and sleeps with a BiPAP (bilevel positive airway pressure) ventilator, which helps him breathe.
“Sometimes his brain forgets to signal his body to breathe when he sleeps,” his mother said.
Amber said Nate has a gastric stimulator, feeding tube and receives regular infusions of immunoglobulins due to his immune deficiency.
Despite the medications and hospital visits, the Ferrell family wants Nate to live a normal life as he prepares to enter middle school. Nate lives in Gainesville with his parents, two sisters and their beagle, Daisy. The preteen enjoys playing the violin and video games.
As for the show, Amber said she was grateful to have their lives forever captured on camera, but staying sane is a priority to her these days.
“It’s hard sometimes,” she said. “It’s therapeutic to work out and release some of the pent-up energy by running and listening to podcasts.”
Sally Gilotti, vice president for content development at Children’s Miracle Network Hospitals, said she first noticed the genuine connection of the featured moms while their children served as national champions for the nonprofit in 2018.
National champions travel around the country to represent Children’s Miracle Network Hospitals at different events and speaking engagements, Gilotti said. From there she formed the basis for “Real Moms.”
“There was something about this recent group of moms which motivated us to tell their stories,” Gilotti said.
Nate said he got close with his fellow champions quickly before and during filming. On days filled with long hours of filming, conference breakout sessions, onstage appearances and interviews, he said the national champions relied on one another.
Although the show puts their lives on display, Amber said she wished something like this would have existed 11 years ago.
“We really value life in a different way now that we have children with medical conditions,” she said. “You need cohorts. You need people who will be there for you when you truly need them.”
Amber said she cherishes her adult friendships with these moms now more than ever.
A fellow “Real Mom” in Ohio recently lost her partner to complications from influenza. Amber and others traveled there to attend his funeral on June 15. She said there was something special about having a group of women who can anticipate the needs you may be hesitant to share with others.
“When one of us grieves, we all grieve,” she said.
It is critical to find joy in every situation, Amber said. Her goal is to raise children who can learn to look at the good, even during the tougher aspects of their shared lives.
“It’s our life in a nutshell,” her son said. “The fun part of it, the busy part of it — I do pick my nose, honestly. It’s fine.”