Infant with rare genetic disease fighting for his life at Duke

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A mother and father are fighting to keep their son alive after he was diagnosed with a rare and potentially fatal illness. (WTVD)

A mother and father are fighting to keep their son alive after he was diagnosed with a rare and potentially fatal illness.

Baby Owen has a genetic disorder called Krabbe disease.

Owen isn't the first one in his family to battle the disease's devastating side effects.

First-time parents Christin and Kyle Webb found the love of their lives in their daughter, Mabry Kate.

Mabry Kate was born a normal, happy baby, but at three-months-old, something changed.

"The first thing we noticed to go was her smile," Christin said.

After months of testing, doctors in her Tennessee hometown were left puzzled. Mabry Kate's symptoms were getting worse.

The family traveled to Cincinnati for a second opinion, and the news they received was devastating.

Mabry Kate was diagnosed with Krabbe disease, a rare genetic disorder that affects the brain. There is no cure, and if left untreated, most don't survive past two years of age.

"It was almost like a dream...a nightmare," Christin said.

Christin and Kyle learned they were expecting again, and that Owen also had Krabbe disease

"To have that news given to you again in such a short amount of time was almost numbing," Kyle said.

The Webbs were referred to Duke Hospital, which offers specialized care for patients with Krabbe through stem cell transplants.

"We've been able to show that if a transfer can be done before a baby is very sick it can arrest progression of disease and prevent many of the symptoms from developing," said Duke Dr. Joanne Kurtzberg.

If successful, babies have a 90 percent chance of surviving.

But for Mabry Kate, the treatment came too late. In February, she took her final breath.

"If she had been diagnosed like Owen in utero and transplanted early, yes, I think her symptoms would have been avoided," Dr. Kurtzberg said.

However, in most states, including North Carolina, newborn screening for Krabbe is not mandated. Christin and Kyle are now working to get the laws changed.

"There's no sense in suffering through the loss of a child if there's a treatment available," Christin said.

Now, the Webbs are praying for Owen's life.

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

Owen will receive treatment at Duke for the next five to seven months.

To find out more about Krabbe disease, click here.

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