Lakota Lockhart slaps a drawing onto the ottoman in his living room. A thick black scribble winds from corner to corner on the white paper. To him, it is much more than a chaotic loop-the-loop of lines, a mad rollercoaster, of sorts, which has been derailed.
It is a cave.
The 7-year-old says the cave is part of his plan to capture villain “Lobo Bounty Hunter.” His name is not actually Lobo Bounty Hunter, but Lobo, a dark, 1980s comic book character who is an interstellar mercenary and bounty hunter. Lakota karate kicks in between sentences that explain his scheme.
First he must lure Lobo to the bottom of the cave. Its whereabouts are unknown, although it could as likely be on Lobo’s home planet of Czarnia as it is at the base of Lakota’s backyard treehouse.
After Lobo reaches the bottom of the cave, Lakota will tie him up with his “stinky” feet.
The stench of Lakota’s socks will make Lobo faint into a pool of water, where Lakota will bop him on the head with one final blow.
“Why don’t you just take him to jail?” his mother, Krystal Lockhart, asks.
She is sitting on the couch next to the ottoman while listening to her son’s active imagination in progress.
“Duh. I tried that already. He’s broken out 10 times,” Lakota says.
“Every day I ask him, ‘What are you going to do today?’” And he says, ‘I’m going to fight crime,’” Lockhart says.
His answer reminds her of the cartoon “Pinky and the Brain,” a show about two lab rats plotting to take over the world every night — if only they could escape their cage.
But Lakota’s desire to fight crime — essentially, to overcome obstacles and work for the betterment of society — goes beyond stippled comic book pages and lighted television screens with Cartoon Network shows.
From Monday, June 20, to Wednesday, June 22, Lakota met with lawmakers in Washington D.C. as part of Children’s Hospital Associations’ annual Speak Now for Kids Family Advocacy Day.
Lakota has congenital central hypoventilation syndrome. The short of it: he stops breathing every time he falls asleep. Less than 1,500 people worldwide have the disorder.
Lakota and his family want lawmakers to pass the ACE Kids Act to allow children better coverage under Medicaid and better care with incentives to build facilities exclusively for children with complex medical conditions.
Like Batman, Lakota’s favorite superhero, Lakota is a symbol. One that can spur everlasting change.
LET LAKOTA LEAD THE WAY
It’s called “The Wall of Lakota.” A portion of the family’s living room is covered with photographs of Lakota. In one shot, he helps his father, Marty, with handiwork. In another, he’s rock climbing.
Lockhart hung the memories by clipping them to string with clothespins as decorations for her only son’s birthday party. She never had a chance to take them down, and a year later they’re still up.
Below them is a pile of medical equipment: a black rolling suitcase, ventilator, suction pump, oxygen and mystery bags. They are a reminder of what it takes for Lakota to build the happy times in the photographs above.
If he overheats while rock climbing, he needs oxygen.
He can’t have sleepovers. He can’t leave the house, even to go grocery shopping with his mom, without those bags.
It’s not a typical upbringing, but the pregnancy was typical, Lockhart says. Lakota was born July 22, 2009 by C-section at Brandon Regional Hospital. Laying on the delivery table after giving life to her son, she was unaware of just how special that life would be until one of the nurses whispered behind her.
Come on, baby, breathe.
Lakota was rushed to the neonatal intensive care unit. For two days, doctors couldn’t figure out why Lakota wasn’t breathing on his own.
A transfer to St. Joseph’s Children’s Hospital confined him to an incubator. Ventilator and feeding tubes were taped to his cheek. His parents still hadn’t held him.
Would he walk? Would he talk? What was wrong?
The Lockharts cuddled his hand through the incubator. Two weeks passed.
Finally, they were allowed to hold their son. Surrounded by nurses and a respiratory therapist, the Lockharts passed their swaddled baby between family members.
“There’s that moment of reality, where you realize your child’s different,” Lockhart says.
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A week later, the doctors began to notice a pattern: Lakota only stopped breathing when he slept. After more research, they diagnosed him with congenital central hypoventilation syndrome, a rare central nervous system disorder, which affects breathing.
There’s no medication.
There’s no cure.
“We just really had no idea,” Lockhart says. “They were telling us everything they knew. There wasn’t much information.”
The Lockharts made the choice get their son a tracheotomy. Lockhart calls it “the best decision.”
After the tracheotomy, Lakota became more relaxed. But there were still trials. Lockhart would watch him as an infant trying to figure out how to eat and breathe. When he began to crawl, he accidentally unhooked himself from his ventilator.
Mom freaked. Until he did it again and again. And he was OK.
She decided to turn the ventilator off.
“We really learned to look at him and see what he wanted,” Lockhart says. “We let Lakota lead the way.”
Leadership — one of Lakota’s many superhero traits.
IT’S A BIRD, IT’S A PLANE, IT’S LAKOTA
After several karate kicks in the family living room, Lakota begins scheming against Lobo again. He talks shark pits, black holes, fireballs, bait nets, motorcycles driving through space — all while punching the air. His mother pulls him from his stories by asking to see his trinkets from Washington D.C. He places them in front of his mother in the living room.
“That’s George Washington’s head,” he says, pointing to a miniature bust of the United States’ first president.
He says he went on a bus tour, met secret service agents, walked through the front doors of the White House. Lots of cool things, yet not cool enough to top the superhero-themed party Children’s Hospital Associations threw for the 41 families who joined Lakota in meeting with lawmakers for Speak Now for Kids Family Advocacy Day.
Lakota got to dress up as Batman and take a photograph with Superman, Green Lantern, Wolverine, Captain America and his role model, Batman.
“Man, I love this picture,” Lakota says as he gazes upon it near his other souvenirs.
The Lockharts were sponsored by St. Joseph’s Children’s Hospital to attend the trip. The family goes to the hospital’s Chronic-Complex Clinic, a facility which provides medically complex children with specialized care.
Lakota, his mother and grandmother, Annel Douglas, met with Reps. Vern Buchanan, David Jolly, Gus Bilirakis, Dennis Ross and Daniel Webster and Senator Bill Nelson to support the ACE Kids Act, or Advancing Care for Exceptional Kids Act of 2015.
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“I’m here to advocate for families, to let families know they’re not alone, but I’m also here to say … this really does affect people. It’s not just words on paper when they pass a bill,” Lockhart says.
When the Lockharts left to Washington D.C., three different news station camera crews met them at the airport. They caught the ever-energetic Lakota jumping up and down and climbing up his dad’s leg. Lakota had never been on a plane before. Lockhart didn’t know what to expect.
They packed his ventilator and suction pump and oxygen under the seats in front of them and buckled up.
At altitude, the meters began to reach tricky numbers, but they were prepared with his equipment. Lakota peeked out the window in the front of the plane to see clouds and cities below. It’s the same view his beloved superheroes see, whether it be in the Batplane or the Invisible Plane.
“He can fly,” Lockhart says. “We can do this.”
***
Wonder Woman
Like her son, Krystal Lockhart is a superhero. She is an advocate for families with children with complex medical conditions.
“My main mission is to let other parents know that they’re not alone … and that there’s help and resources,” Lockhart says. [[{“fid”:”158875″,”view_mode”:”default”,”fields”:{“format”:”default”,”field_file_image_alt_text[und][0][value]”:”The Lockharts visit Rep. Dennis Ross. “,”field_file_image_title_text[und][0][value]”:”The Lockharts visit Rep. Dennis Ross. “,”field_file_image_caption_text[und][0][value]”:”The Lockharts visit Rep. Dennis Ross. “,”field_file_image_for_sale_url[und][0][value]”:””,”field_image_type[und]”:”_none”},”type”:”media”,”attributes”:{“alt”:”The Lockharts visit Rep. Dennis Ross. “,”title”:”The Lockharts visit Rep. Dennis Ross. “,”height”:”1705″,”width”:”2348″,”style”:”width: 400px; height: 290px; float: right;”,”class”:”media-element file-default”}}]]
She’s started a blog, PennedWithGrace.com, and she is a regional coordinator for the second CCHS Day, which will raise money for research and provide college scholarships to those with the condition.
She’s also active on the CHHS Facebook, where she mentors families. She says she knows of 26 families in Florida with a child with CCHS and 400 around the United States.
“It just feels good to know another family is going through the same struggles,” Lockhart says.
Contact Amber Jurgensen at ajurgensen@plantcityobserver.com.