To a soldier, the Fort Hood water tower with a big “A” at the top might represent the First Army Division West, but to one chubby-cheeked young boy, it is the headquarters of Captain America.
Antonio Laguna, also known to his family and friends as Supertonio, the 7-year-old son of Sgt. Frank Laguna, a small arms/artillery repairer with Bravo Company, 115th “Muleskinner” Brigade Support Battalion, 1st “Ironhorse” Brigade Combat Team, 1st Cavalry Division, was diagnosed with the rare and terminal disease of Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation about a year ago.
Candace Laguna, Antonio’s mom, said ROHHAD affects everything the body is supposed to do naturally, like weight management, eye focus, bowel movements, breathing, temperature regulation, and even psychological behaviors.
“It’s like a computer,” Laguna said. “Even though it is supposed to run automatically it glitches and doesn’t always do that, it’s dangerous.”
Antonio’s parents knew something wasn’t right when Antonio was just a toddler. He gained 40 pounds in two months when he was 2.
The Lagunas took Antonio to see multiple specialists, who kept insisting it was his exercise and diet plan, but his parents knew that wasn’t the case.
“He is engaged in sports,” Frank Laguna said. “He eats fish and vegetables ... no 3-year-old has ever had a more perfect diet.”
So, they kept searching for answers.
While seeing an asthma specialist, the doctor noticed Antonio was hyperventilating. When his records were rushed to a pulmonologist at the Brooke Army Medical Center in San Antonio, he was finally diagnosed with ROHHAD.
Even though there is no cure for Antonio’s condition, Candace Laguna believes that finding an answer saved her son.
Since ROHHAD affects the body’s ability to remind the body to breathe, the doctor got Antonio a bilevel positive airway pressure breathing machine to help him breathe when he is sleeping.
Although the Lagunas were grateful they finally knew what the issue was, they were devastated by the results. The sergeant was at work when his wife called saying she was coming to pick him up. Antonio had a terminal disease.
“We lost it. What are we supposed to do?” Frank Laguna said, teary-eyed. “They just gave him a death sentence.”
After learning the few options ROHHAD patients have, Antonio’s parents spent night and day searching for doctors across the country who could give him even a little hope. After many disheartening phone calls to specialists, they received a hopeful message from Johns Hopkins Hospital in Baltimore. They had an experimental chemotherapy treatment they wanted to test.
Wanting to give their son the best chance for a normal life, the Lagunas packed up and traveled to Baltimore.
“They told us before we left they wouldn’t know if the treatment worked until he outlived us,” Candace Laguna said. “So I told them, ‘OK, I will just wait around for that.’”
While in Baltimore, the Lagunas found a support group with children who also suffer from ROHHAD. Within their first year in the group, the Laguna family saw three children lost. The children were between the ages of 5 and 9, the normal lifespan of a child with this condition.
While undergoing chemotherapy, Antonio was granted the opportunity of a lifetime, the wish of his choice.
Antonio’s wish: an orchard and greenhouse, where he could raise fresh fruits and vegetables to sell and raise money to plant more trees. “It’s also fresh,” he said. “I like fresh.”
Since being diagnosed, Supertonio hasn’t let the diagnosis get him down, and his parents have done what they can to support a normal life. He goes to school, takes care of his garden and chickens, and has chores.
After only meeting Antonio a few times, Muleskinner Battalion Command Sgt. Maj. Russell Salter said that despite everything he has endured, Antonio is still an energetic, fun-loving young man.
“(He is) excited about life,” Salter said. “Let me tell you, Antonio cares about other people.”
The Laguna family has done everything they can for their son and are thankful for every minute they get with him.
“A lot of people think they have so much to complain about, and so much isn’t good enough or enough,” Candace Laguna said. “Be thankful. Stop complaining.”