Tennessee Baby Fighting Krabbe Disease at Duke Hospital

Christin and Kyle Webb, parents of a one-month old boy in Tennessee (USA) are desperately trying to save their son after he was diagnosed with a rare and deadly disease.

Owen Baxter suffers from Krabbe disease, a genetic degenerative disorder of the nervous system, which has no cure. The disease destroys the protective coating of nerve cells in the nervous system including brain. Its current treatments focus of supportive care. If the symptoms are left untreated, most children don't survive beyond two years of age.

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However, stem cell therapy has shown promise and cured infants who are treated much before the onset of symptoms.

This baby boy, however, isn't the first one in the family to battle the side effects of the disease.

Krabbe Disease Takes 10-month-old Mabry Kate

The couple’s first-born, Mabry Kate, was born a normal, happy 8lb baby on March 30, 2014.

“She was smiling in response to everyone, raising her head and chest when on her tummy, gripping objects in her hands and accomplishing many other developmental milestones as most babies do,” recalled Christin. But something changed when she was three-months-old.

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Mabry had developed urinary tract infection and the Webbs took her to nearby hospital in Tennessee. Christin explained sadly that the first thing she noticed was that her daughter lost her beautiful smile. “Then she began having acid reflux issues – she would spit out the food, and it went on throwing up everything she ate. At four months, she was grossly underweight and couldn’t hold her head up any more.”

Even after months of medical examination, doctors in Tennessee were unable to diagnose her problem. The parents became desperate and traveled all the way to Cincinnati for a second opinion. That’s when she was diagnosed with Krabbe disease. Unfortunately, the treatment came too late for Kate; she succumbed to the disease last February – less than 2 months short of her first birthday.

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The degenerative disorder eats away at the myelin sheath of the nervous system, and occurs in one of every 100,000 births. “Imagine removing the tubing around an electrical wire,” Christin said. “Your child can get it ONLY if both parents carry the chromosome. Only one in 200 people are carriers of the disease, and it’s tragic that we carry the chromosome. Basically, any child we have will have a 25% chance of contracting the disease.”

Baby Owen has 90% Survival Rate

Parents are now providing treatment to Owen at Duke University Medical Center, Durham, North Carolina, which provides children of Krabbe disease with specialized stem cell treatment. If it’s successful, Owen has 90% chance of surviving

"If stem cell transplants are done before a baby is very sick, it can prevent the progression of disease and stop many symptoms from developing. If she had been given transplants like Owen, yes, we believe her symptoms would have been avoided,” said Dr. Joanne Kurtzberg at the hospital.

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"The fact that Mabry was that big of an influence on us as parents and the kind of impact she has had on Owen's life, we certainly do hope he gets the chance to see that," Kyle said.

Owen will have to stay more than 6 months at the Duke Hospital. The parents have raised $6,755 for the treatment using You Caring, a crowd-funding website.

Owen Shows Improvement, But His Fight Against the Disease not Over Yet

Baby Owen is currently undergoing treatment including chemotherapy and stem cell therapy at Duke Hospital. He is doing well with treatment. On May 5, he came out of the Pediatric Intensive Care Unit.

“We are thankful to the people who pray for Owen. Most people drop in here say Owen is really strong, which makes us proud parents. Owen is pretty feisty but has also got a sweet side to him,” Christin wrote on Facebook.

On May 14, Kayle posted on Facebook, that Owen is working hard to breath. “He's currently on Heliox, a mixture of oxygen and helium. Heliox has a density that is less than that of air. It really helps him, but still sometime he is working hard to breathe. The new breathing problem coupled with his condition makes survival difficult for him. Please pray for him, if heliox doesn't work well for him, the next step is going back to the PICU and being placed on Bilevel Positive Airway Pressure (BPAP) again.

BPAP is a system that allows unrestricted spontaneous breathing. Owen has overcome so much already. We don't want see him again going back to the stage that he’s already passed through,” he wrote.

Mabry Kate’s Law

Public health advocates say that newborn screening for the killer disease is not mandated in many states, including North Carolina. In their effort to get the state’s mandate to screen babies for this genetic disorder, the Webbs succeeded in getting a bill filed by State Representative Bill Dunn. The Senate and House voted unanimously to pass ‘Mabry Kate's law’, now it awaits the signature of the Governor.

"It makes no sense in suffering the loss of your child when there's a treatment available," Christin said.