Thanks to modern medicine and the power of love, baby Levi got the miracle he needed!
Kala Looks’ newborn son was born with an immune system condition so severe, it’s known as “The Boy in the Bubble” disease. But through the power of love and a breakthrough of modern medicine, little Levi would get his miracle!
Kala Looks gazed down at one two-week-old baby in the crook of each elbow. After a perfect pregnancy, fraternal twins Colton Paul and Levi Robert had been born full-term— and big for twins!—weighing five pounds, 10 ounces, and six pounds, nine ounces!
Though exhausted, the Coopersville, Michigan, new mom felt so blessed she beamed up at her high school sweetheart-now-husband, Phillip: “Is this for real?” But soon after, the phone rang. “In the hospital, your babies underwent a screening,” a state health official said. “One is testing positive for severe combined immunodeficiency [SCID]. We need you to bring him in for more tests right away . . . ”
The boy in
the bubble
Extremely
rare and commonly known as “Bubble Boy” disease, SCID occurs when a deficiency of the immune system’s two major weapons—antibodies and T cells—are genetically missing or disabled. Further blood work determined Levi had just 10 T cells when the normal count is 2,000!
Levi had seemed so healthy and strong. But now, with hardly any immunity, the slightest cut when trimming his nails could lead to infection. If he caught a cold . . . Will my baby survive? Kala wept. At least Levi’s early diagnosis was a blessing: Michigan had only begun testing newborns for SCID in 2011; many states still don’t. And now that they knew, a stem cell transplant could potentially cure Levi, University of Michigan specialists explained.
Still, Levi couldn’t undergo the transplant—which involved chemotherapy to obliterate his own cells, replacing them with healthy bone marrow from a donor—until he was three months old. Until then, Kala and Phillip would have to prevent him from getting sick.
Levi was started on broad-based antibiotics. He was confined to the house—no “playdates” with Kala’s friends and their kids; no walks in the park or even church. And Kala had to keep everything not just clean, but sterile. When Phillip came home from work or the store, he would leave his clothes in the garage. Hand sanitizer was kept by the door; every doorknob had to be wiped down. And the only guests allowed were grandparents—and they had to wear face masks. Unaware of the dangers, Levi flashed grins as Kala fed him—and smiled even as he slept. And Kala’s heart filled with gratitude that if Levi couldn’t be around other people, at least he had Colton. Unfortunately, Colton wasn’t a close enough match to be Levi’s donor—and a bone marrow drive didn’t reveal a better option. Levi’s best hope was Kala, but even she was only a half match. “Let’s do it!” Kala blurted. And yet, it felt like a shot in the dark.
But just as Levi was about to start chemotherapy in preparation for the transplant, his doctor learned about revolutionary gene therapy being performed at DanaFarber/boston Children’s Hospital. In the clinical trial, doctors would harvest Levi’s bone marrow and send his cells to the laboratory where, using a “viral vector”—a deactivated virus—they would insert a corrected gene into the DNA of his marrow cells, then transplant them back into Levi via IV.
The hope was that the cells would replicate, creating a whole new healthy immune system. With gene therapy, Levi also wouldn’t have to endure chemotherapy, and since it was his own marrow, there would be no rejection.
However, the procedure was still just in the study stage.
“How do we sign our baby up for something so new with no guarantees?” Kala asked Phillip.
A normal life!
Then Kala read about a fiveyear-old boy from Argentina with SCID—AND how gene thera- py had saved his life. “It’s the best choice Levi has,” they decided.
Boarding the plane to Boston, relatives watching Colton, Kala was terrified: What if someone coughed around tiny Levi? Yet once they met hematologist SungYun Pai, M.D., she and Phillip knew Levi was in good hands.
Soon after, watching the re-engineered cells drip into his tiny body, it seemed too easy. Could this really be the miracle he needs? Kala wondered.
But over the next three weeks, every test showed Levi’s T cell count rising! Even after they went home, Levi’s T cells climbed to 400 . . . 1000 . . . 1900!
Today, two-year-old Levi has a virtually normal immune system! This winter, he fought off bugs as quickly as Colton. He can go to church, and someday school! For now, though, the best part is Levi being able to run and play outside.
“Our family has had an amazing front row seat to the power of God’s love and modern medicine,” Kala beams. “Doctors call Levi a medical miracle. We’re just happy to call him a normal little boy!”
It is often in the darkest skies that we see the stars.” brightest RICHARD EVANS