LAKE CHARLES, La. – Justus “Zion” Gennuso doesn’t look like a kid who wasn’t supposed to live to past the age of 9. Now 16, Zion stands 6-foot-3, 236 pounds and plays football for Hamilton Christian School in Lake Charles.
His smile and quick wit are unexpected from someone, who at the age of five months, lived on a respirator for a month. Zion has since endured more than 500 doctor visits and countless surgeries, which include doctors drilling into his bones during multiple bone marrow biopsies.
Zion has an immune deficiency disorder that has left him with leukemia, a low heart rate and kidney problems. Monthly infusions that help him fight infections cost $22,000 per dose.
Yet Zion is at a milestone few thought he would reach. He starts his senior year in high school this month.
He spent the summer driving an old pick-up truck which he calls “The Blue Beast.” He’s been spotted on stages across south Louisiana, playing rubboard and rapping in his uncle’s group, Keith Frank and the Soileau Zydeco Band.
“I’m feeling great,” said Zion, who turns 17 on Aug. 15. “I can’t complain, as long as I’m alive every day.
“I wake up to the best life. I could never ask for better parents. They support me in everything I do. I love them for that and I thank them.”
Zion’s mom, Jennifer Frank Ledet, is more cautious in her optimism. Along with a neck, chest and arms scarred from surgeries, Zion has a two-year-old bump over his left eye.
Zion’s weakened heart caused him to pass out while receiving Communion in church. His forehead collided with a brick wall, knocking him unconscious.
“It’s been one thing after another,” said Ledet. “But to get to this point, we’re very, very happy.”
Zion Gennuso is one in a million. That’s how the Hyper IgM Syndrome Foundation describes the rare genetic mutation that severely compromises his immune system.
His body’s inability to produce antibodies leaves him open to repeated infections. Those infections can lead to a life filled with pneumonia, hepatitis, chronic diarrhea, arthritis and other extreme ailments.
Patients have a life expectancy of 30 years. But Zion was gravely ill just weeks after his birth.
On a respirator at five months, Zion became a medical guinea pig. Doctors in Louisiana had little experience with a child who was so sick and so young.
“The doctors figured out that when he got his two-month shots, he got sick,” said Ledet. “He got better.
“But at the four-month shot, he got sick and didn’t get better. The doctor was treating him for the wrong illness.
“Seventeen years ago, they didn’t have as much information as they do now. When he was diagnosed, they told us he was the youngest one in Louisiana to have it. There weren’t that many kids in the world with it.”
Zion began a life of IVIG, monthly infusions of immunoglobulin replacement therapy to help him battle infections. The treatments helped, but the illnesses, including leukemia, continued.
In 2005, doctors said Zion needed a stem cell transplant to arrest the cancer. But Zion and his mother are Catholic.
Although its position has evolved, the Catholic Church has opposed some forms of stem cell research. Priests told Ledet the transplant was cloning and should not be done.
But after much praying with family, Ledet went ahead with the first of two transplants Zion has had in his life.
“My mom and my dad told me at the end of the day, it’s our lives and we have to do what we think is best for him. He was 3 years old and not at an age where he could make that decision. We couldn’t put it in somebody’s else’s hands that didn’t know the situation, from when he was 5 months old until now.
“If it’s an opportunity for him to lead a semi-normal life, you can’t pass it up. You have to at least try. If you don’t and something happens, you always wonder why you didn’t do it.”
Twelve years after his first transplant, Zion leads a “semi-normal” life of school, football, video games, watching WWE and playing in his uncle’s band. But his existence still includes doctor visits, IVIG infusions, strict diets and a constant vigil against germs.
Zion eats pickles and chips throughout the day to support his damaged heart. He brushes his teeth with bottled water. Tap water, which can carry bacteria, is a no-no. Any ice has to be made with water that has been boiled first.
Even a restaurant hamburger with lettuce has to be sent back. Ledet said vegetables are sometimes imported from countries that grow them in feces. Zion can’t take the risk.
With all the safeguards, doctors encourage Zion to lead a normal life.
“He can do things within reason,” said Ledet. “The football thing was a touchy subject. I was not for it. But the doctors ran a lot of tests and said he was OK to try.
“After a concussion, he might have to stop. There’s been a lot of praying.”
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Zion has memories of sleepless nights in the hospital and a bout of chemotherapy that caused him to lose 100 pounds. Now he’s more concerned about his football team improving on its 2-8 record from last season.
“I don’t regret anything. I might be able to help future doctors find research.
“Find someone they can cure, so that this won’t happen to other people. It’s a lot.”