CAPE CORAL, Fla. — Gavin Lawrey's blond tousled hair lays draped on a pillow wedged between cushions and a green toy frog.
The tiny 6-year-old will sleep for another 16 hours as dusk falls. His mother, Brandi Lawrey, measures his oxygen and heart rate using a device she clips on his finger, then kisses him gently on the forehead.
He barely stirs.
Brandi always said that if she didn't laugh, she'd cry. It's a lesson she'd learned from an old soul — her son. The boy occasionally smiles even as he takes his nightly seizure medication. He jokes in spite of feeling tremulous, in spite of choking, in spite of the pain. He is more than content to eat Vanilla Chex cereal with every meal, mainly because it gets mushy, making it easier to swallow.
Gavin is the child who has the spirit to take an incurable illness that's crippled his health called mitochondrial disease and turned it into his superhero persona. When he puts on that blue-green cape and mask, he is transformed into Mito Action G. His super powers take Mito away. He's the protagonist of a book, "Mighty Mito Superhero," one of the stars of a Lee Memorial Health System billboard off Alico Road and has written songs with his music therapists from Hope Hospice.
Gavin is dying. But he and his family will never stop hoping, never stop fighting for his life.
The night is cool and Makenzie, Gavin's older sister, wants to fall asleep on the lanai where her mother sits quietly. It's close to bedtime but she's had trouble sleeping recently. The little girl plays soft music on her iPad. It soothes her. In hushed tones, she calls her mother over, uncertainty filling big brown eyes.
Makenzie is a 9-year-old who has seen far too much pain, who knows the fear of losing a sibling. But dread rarely takes hold where hope lives. And it's within every crevice of this family's home. She knows doctors said Gavin needs a feeding tube. It's a surgery that will help him get necessary nutrition and medications when he's too weak to swallow on his own or wake up.
The idea frightens Makenzie. She doesn't understand its purpose or why he needs it. It makes her worry he's getting sicker. And she knows her mom has been crying. Brandi's eyes are red and puffy.
"A feeding tube sounds very scary," Brandi says as she sits down next to her daughter. "It's OK to be scared and it's OK to be nervous and it's OK to cry."
Brandi has been trying to teach Makenzie that she can show her vulnerable side. When previously she'd put on her best face to confront each day, she's now trying to set a better example for her daughter, to help her express her emotions in a healthy way.
"We're doing this because his doctors believe this is the best shot we have to make (Gavin) the best version of himself," Brandi continued. "He's not going to be perfect, but we will love him for every imperfection he has because his imperfections are perfect to us ... we were put in his life for a reason and we just have to stay strong for him."
Last summer, Makenzie took this to heart. She decided to write a book featuring her brother as the "Mighty Mito Superhero." In simple paragraphs through cartoons drawn by a local illustrator, she explained what Mito does, what the patient goes through and how her brother fights it on a daily basis.
The book went viral. She sold 500 copies in the first week and hundreds more since, totaling $1,600. She was No. 8 in overall best-sellers on Amazon. Her book has been featured on ABC and The Huffington Post. The book traveled the world, jumping continents and getting translated into a number of other languages. Visitors from Germany, Chile, Argentina and other nations visit Gavin's Facebook page weekly to leave blessings and well-wishes.
"The hardest parts of writing my book were the things I didn't know about Gavin," Makenzie said. "Like how bad it affects your body. I didn't know some Mito patients had to be in a wheelchair and that was really scary for me."
On rough days, Gavin is dazed and in pain all over his body. The smallest activity wears him out. Morphine is his main relief. He takes a minimum of 45 milligrams a day on top of another milligram every two hours as needed. Makenzie can tell that his health is worsening.
Gavin now has a compactable green wheelchair called a "Green Machine" to carry him. Green is the color for Mito. His mother uses it daily to get him from the car to his classroom at Caloosa Elementary School. Neon green plastic braces are tucked into his shoes to help him walk properly and not drag his feet due to muscle weakness and feeling loss. Similarly, due to muscle weakness in his mouth, he has trouble swallowing. His face seems gaunt, outlining purple bags that lodged themselves under his bright eyes. Dozens of times a day he feels the need to inform his mother with his speech impairment, "Mom, I chok-ed."
Meeting the doctor
Two wooden chairs are next to each other. Hands are clasped tightly as tears begin to fall. It's October 2013, and Brandi is trembling.
"I always knew I would have to have this conversation with you," said Dr. Jose Colon, from behind a desk. "But I was hoping it wouldn't be this soon."
Colon has been an advocate, neurologist, sleep doctor and family friend who has worked with Gavin since prior to his diagnosis. He has spent years searching for answers and dealing with other doctors around the nation on the boy's behalf. He lost sleep the night before this meeting, knowing he needed to tell the family the truth.
Gavin's body is shutting down.
"He has gotten worse in the last year," said Jeff Lawrey, Gavin's father. "We can be out in public and people say he looks good or looks like he's having a good day, but he isn't. He's more tired, not wanting to do certain things like leaving the house. Two hours max and then he wants to come home."
This dark day became the catalyst that motivated Brandi and Jeff to commit to their daughter's vision. She'd decided she wanted to raise $1 million in a year for mitochondrial research. All money from book sales and fundraisers will go to her mission. They're now at $45,000.
"Every day is about moments," Brandi said. "Not even minutes or seconds. I feel like my focus is getting Makenzie to her million. I think it's about more than the money, it's about her knowing she's done everything she can to help her brother."
For the rest of 2014, this remains their focus — no matter what. The family wants to spend as much time as they can together, to make the most of the time they have left.
Brandi has explained to her daughter reaching the $1 million goal will not automatically bring a cure. But this makes Makenzie part of something larger, part of an effort that will save lives. It just may not be Gavin's life.
Love with intensity
Gavin occasionally asks his mother if he's going to pass away.
Sometimes he tells people he just can't handle his Mito anymore, that he wants a cure because this disease is tough and he wants to stay alive.
"He's scared," Brandi said. "He's scared he's not going to be with us anymore."
Gavin is a child who loves with intensity, perhaps because he's aware he's not getting better. It could just be a characteristic he was born with.
When he's not tremulous, on days he can take a bath, he can wash himself like a big boy and play with his toys. He uses half the bottle of soap. He makes sure to kiss, to hug, to tell Brandi she's the best mom ever.
The bubbles float away and the sound of his giggles warms his mother's heart.
When he can enjoy a corn dog at a baseball game with friends, take a photo he's proud of, beat his sister at a Ninja Turtles game or fix his mom's boo-boos as Dr. Gavin, it's a good day.
He is alive in those moments…for however long they last. Nothing else matters.