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.
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.
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
Krabbe Disease Takes 10-month-old Mabry Kate
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
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
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.
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
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.
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
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.