“Never in a million years did I think he’d get TB.”
Kristine,* a Dallas-based teacher, is talking about her 2-year-old son, Jackson,** who was diagnosed with tuberculosis (TB) when he was just 2 months old. “We were a middle-class family who had never traveled outside of the United States,” she says. “We weren’t supposed to get this disease.”
TB is one of the world’s greatest health threats: Each year, 10 million people are diagnosed with active TB, and approximately 1.7 million die from the disease. And while the vast majority of TB deaths occur in developing countries, the disease—which most frequently affects the lungs and causes symptoms like coughing, fever and fatigue—knows no borders.
And while TB most commonly affects adults, approximately one million children develop it, and nearly a quarter of a million die from the disease every year. The disease is also more difficult to identify in children, who are more likely to develop more severe, life-threatening forms of TB.
Johnson & Johnson has a long history of innovating to combat TB. In 2012, the company introduced the first TB drug with a novel mechanism of action in more than 40 years, and in 2018, the company announced a 10-year commitment to help end the TB pandemic by expanding access to treatment, improving patient diagnosis and accelerating research for new TB treatments, including developing pediatric formulations for its own medicine.
“This is a disease that we can beat,” says Cat Oyler, Vice President, Global Public Health, Johnson & Johnson. “We have a continued responsibility to keep innovating in this space so we can create a world without TB. And keeping the patient at the center of everything we do is essential. We need to make voices like those of Jackson and his mom heard.”
For Child Health Day, we’re sharing Jackson’s story to help raise awareness around TB—a disease that can impact anyone, anywhere.
Two-month-old Jackson was running a very high fever.
Doctors at a Houston hospital initially diagnosed the infant with pneumonia, but his high temperatures persisted. As a mother of three, Kristine knew when to listen to her gut, and she just had a feeling that something else was wrong.
The doctors continued investigating, and eventually an X-ray showed that Jackson’s left lung had collapsed. Further testing revealed a shocking diagnosis: TB.
“We couldn’t figure out how he got it,” Kristine says. “And then we learned how an extended family member, who we’d recently spent time with, had died. It was TB. No one has ever figured out where he contracted it. It was like a bad nightmare, and it got worse when we got the results of Jackson’s CT scan and learned how much the disease had spread.”
The TB showed up on Jackson’s scan like a million little white dots. “It was like looking at the star-filled sky on a clear night,” Kristine says. “It was everywhere, including in Jackson’s brain, and it was terrifying.”
You don’t hear the word ‘tuberculosis’ very much these days, but it can affect anybody. It doesn’t have a gender, it doesn’t have an age, it doesn’t have an ethnicity. It’s a disease that anybody can catch.
Kristine stayed by Jackson’s side in the hospital for six weeks. “It was pretty rough financially,” she says. “I had already been on maternity leave that year from giving birth to Jackson, and I didn’t get paid during that time. And then he got sick and I was away for another six weeks without pay.”
The stigma associated with TB also took a toll on the family. While Jackson was being treated, Kristine’s 8-year-old daughter received a positive skin test for the disease, which means she had been exposed to the bacteria that cause TB, but was not sick and had no symptoms. Still, doctors wanted to take every precaution, so she and Kristine’s 10-year-old son were put on preventive medicine, which the nurse would come and administer, for several months. “They were a little embarrassed at school because kids would wonder why they had to take medication,” Kristine recalls. “It died down after a while, but it did affect them.”
Jackson was on medication for 18 months, and doctors said he wouldn’t have made it if they’d waited one more week to start treatment. “He’s our little miracle,” Kristine says.
Moving forward and advocating together
Jackson is now cured; however, as a mother and a teacher, Kristine can’t help but worry about whether the disease could have any long-term effects.
She also worries that the TB will come back, but doctors reassure her that Jackson is a perfectly healthy 2-year-old boy. “He’s going to get colds. He’s going to sprain his knee and get a boo-boo. It’s normal. There’s nothing wrong with him,” she says. “Of course, we’ll continue keeping an eye on him, and I’ll continue to hold my breath.”
Jackson just started daycare, and he absolutely loves books. His favorite is Three Little Ghosts, about a trio of mischievous ghosts who are scared of their own shadows.
And even at just 2 years old, he’s no stranger to advocating for TB awareness: Kristine and Jackson have traveled to the United Nations in New York City, Washington, D.C. for a National TB Day event and beyond to share their story.
“If you would have told me that I would have a baby that would survive TB, and that we’d travel the country trying to bring awareness to this disease that should not even be around, I’d have thought you were crazy,” she says.
Jackson certainly loves the spotlight. “He knows how to work the room, let me tell you,” says Kristine, laughing. “One time he sat next to the first lady of Belize in New York, and Jackson reached over and started grabbing the grapes off her plate. I was like, ‘I’m so sorry!’ But she was so nice about it.”
Kristine knows that Jackson likely won’t remember these special moments, so she takes lots of pictures to capture the unbelievable journey he has been on.
“You don’t hear the word ‘tuberculosis’ very much these days, but it can affect anybody,” she says. “It doesn’t have a gender, it doesn’t have an age, it doesn’t have an ethnicity. It’s a disease that anybody can catch. And we’re so grateful that our story turned out the way it did.”
*Last names have been omitted to protect a minor
**Subject was not treated with medication from the Janssen Pharmaceutical Companies of Johnson & Johnson
