When Libby Horaitis was 17, doctors told her she would never be able to conceive. Although she had always dreamed of becoming a mother, she resigned herself to the fact and told her husband, Ken, when they got serious. So you can imagine the joy when the couple learned she was pregnant — a joy that was eventually tempered with worry when a sonogram showed that the baby had a rare condition.
Her “miracle baby” was diagnosed with situs inversus totalis, which means complete transposition (right to left reversal) of the thoracic and abdominal organs.
“As a mother, I was extremely scared,” recalls Horaitis, now 45. “It took a while to sink in.”
She never doubted, however, her role in her son’s life. “He is my gift from God. I was going to have this baby no matter what, and I knew we would deal with what we have to deal with.”
Born two months early, Alex spent three weeks in the hospital, attended by a bevy of specialists. Once home — the family lived in Madison, Wisconsin, then — medical visits became an integral part of their lives. His father, Ken Horaitis, a disabled former Marine, explains: “We spent a lot of time at doctors’ offices, at hospitals, at tests. That’s pretty much what we were doing all the time.”
Then the family’s lives got even more complicated. At 4, Alex was diagnosed with primary ciliary dyskinesia, a disease that often accompanies situs inversus totalis. Ciliary dyskinesia can be life-threatening. The disease affects the hair-like structures that line the airways (cilia), which carry mucus toward the mouth to be coughed or sneezed out of the body. The proper functioning of cilia is essential because if they don’t work well, bacteria stays in the airways, causing breathing problems, infections and other disorders. As a result, Alex has a difficult time fighting off infection. He has had 26 surgeries and procedures, including nine sets of ear tubes. He usually gets pneumonia a couple times a year. To a certain degree, the life of this 12-year-old boy revolves around the medical solutions that will keep him breathing.
He takes about 10 different maintenance drugs and uses a nebulizer twice a day. When the mucus clogs his airwaves, which it too often does, a blue vibrating vest shakes it loose so he can then expel those secretions through coughing. He also has been diagnosed with Asperger’s syndrome.
To see him … to see him like this … and when he’s in the hospital, it’s hard. You end up asking yourself: What did I do wrong? But then you got to pull yourself together and make the best of it.
Alex is a seventh-grader at Ace Academy in Florida City. This is the first time in four years that he has been able to attend school with his peers. In the past, it has been mostly home-bound instruction.
“We want him to have a normal life as much as possible,” Ken says, “but you find out that you have to live day by day.”
Alex has a best friend who lives nearby, but most kids his age, Libby says, don’t understand why he can’t play outside much. And when he does play outside, it’s not long before he staggers back into his tiny bedroom in the back of the camper his parents own.
Alex, however, rarely complains.
“He’s very techie,” says Ken, 52. “He likes playing his games. He likes PBS, and he watches the history and science channels.”
The situation isn’t easy on his parents.
Libby: “Sometimes I have to go somewhere and cry, but then when I see what he goes through, I realize I can’t be a complainer.”
From Ken, his voice breaking: “To see him … to see him like this … and when he’s in the hospital, it’s hard. You end up asking yourself: What did I do wrong? But then you got to pull yourself together and make the best of it.”
The family has also had a series of economic setbacks. Maria Barros, the director of The ARC of South Florida, which serves more than 60,000 Miami-Dade County residents with intellectual and developmental disabilities, nominated the family for Wish Book. She notes that Libby lost both of her part-time jobs months ago and that Ken, with PTSD, is unable to work.
“They’re trying so hard, but they struggle,” Barros says. “It’s been a difficult situation for them having to care for a child who is so medically complicated.”
The Horaitises have been living in a one-bedroom camper in a Florida City campground since they moved to South Florida from Wisconsin eight years ago, fleeing the harsh winters that made their son’s breathing even more difficult. Here, they found “a medical team that is more open-minded about figuring out solutions,” Libby says.
They managed to keep their heads above water until Libby spent several months unemployed. The family ate through a small nest egg until Libby landed a night job at a nearby hotel the week before Thanksgiving. Still, the family could use help.
Alex had a recent growth spurt and is in desperate need of clothes (size 14) and shoes (size 7). He has also outgrown his bike and could use a new one. The family owes back rent, too, and the old camper needs a new floor. Libby bought tile months ago in a clearance sale, but neither she nor Ken know how to install it. Ken’s 2003 Dodge truck is broken, and he would like for someone to either repair it or show him how to do it.
Alex, a naturally quiet boy, is reluctant to ask for what he wants. He spends most of his time outside of school in a tiny bedroom cramped with medical equipment. Curtains with the U.S. Marine insignia, hand-sewn by Libby, cover the window. Camouflage sheets decorate his bed. He would like to be a Marine just like his father was — and neither parent has the heart to convince him otherwise.
After much prodding, Alex admits he would like a new controller for his Xbox game system, as well as the 2017 Farming Simulator game to go with it. His parents hope for something more intangible.
“I’d like a better quality of life for him,” Ken says. “I just want him to be able to do what he likes to do, whatever makes him happy.”
How to help: Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. To give via your mobile phone, text WISH to 41444. For information, call 305-376-2906 or email wishbook@MiamiHerald.com. (Most requested items: laptops and tablets for school, furniture, accessible vans) Read more at MiamiHerald.com/wishbook.
How to help
Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. To give via your mobile phone, text WISH to 41444. For information, call 305-376-2906 or email wishbook@MiamiHerald.com. (Most requested items: laptops and tablets for school, furniture, accessible vans) Read more at MiamiHerald.com/wishbook.