Former Powell coach receives positive report on son's genetic disease
For the first time in a long time, Kyle and Christin Webb of Powell are genuinely optimistic and upbeat about the future.
Their young son Owen, who was born with a rare genetic disease that often takes the lives of children before they reach age 2, recently passed another battery of milestone tests at Duke University Medical Center.
“We just got back from Duke a couple of weeks ago,” said Christin.
“Owen had all kinds of tests, from MRIs to blood tests to electrocardiograms. The doctors at Duke think he looks really good and they’re really happy with his progress. He looks like a normal kid, for the most part. Owen is doing well. It’s kind of like a breath of fresh air not to have to worry about anything awful.”
► More:Powell coach Christin Webb standing strong with baby Owen
If any couple deserves to have a little peace of mind, it’s the Webbs.
Their daughter, Mabry Kate, died of Krabbe disease on Feb. 7, 2015, at only 11 months of age.
Owen, like Mabry Kate, has the rare degenerative disease, which occurs in just one of every 100,000 births.
Krabbe disease affects the myelin sheath of the nervous system. Webb said it’s like removing the insulation from around an electrical wire, causing a short-circuiting of the system.
Krabbe disease causes tremendous pain, and its young victims eventually lose the ability to see, hear and hold down food. Finally, they lose their ability to breathe.
While mourning the loss of their daughter, the Webbs had to deal with the devastating news that unborn son Owen also had Krabbe disease.
The only way a child can get the disease is if both parents carry the chromosome for Krabbe. Only one in 200 people are carriers of the disease. Any child the Webbs have will carry a 25 percent of contracting Krabbe disease.
During the ordeal, Christin, who is a teacher at Adrian Burnett Elementary School, continued her demanding duties as coach of the Powell High School girls basketball team.
In 2016, she was recipient of the PrepXtra Stan Ballard Courage Award, which is given in honor of the longtime area coach who died of cancer.
Christin resigned in April after coaching the Lady Panthers for three seasons. Over that span, Powell went 52-35 with three straight appearances to the region tournament.
Shortly after the death of Mabry Kate, Christin gave birth to Owen.
The infant spent the first seven months of his life at Duke Medical Center.
Up until recently, there was no treatment for Krabbe after the onset of the disease, which is typically shortly after birth.
Owen went through grueling months of chemotherapy and revolutionary stem-cell transplant.
“He was just the second child in the world to have the transplant,” said Christin.
Basically, she explained that the new transplant process gets stem cells to the brain quicker than previous treatments.
So far, all signs point to a healthy Owen, who turned 2 in March.
“There are no signs of progression of the disease,” said Christin.
“His speech is a little delayed, but his therapists say he is very smart. He keeps doing new things and started using his walker two or three months ago. That was a big step. He loves it (the walker) and points at it all the time. It gives him a new perspective.”
Christin said the goal is to have Owen walking by the time the family takes an October vacation to Disney World.
“He loves Mickey Mouse and Donald Duck,” said his mom.
Christin said her son will be closely monitored the rest of his life to make sure the disease isn’t progressing.
“Because it’s a genetic disease that is embedded in his DNA he will always have the disease.”
The Webbs will be front and center for another milestone on July 1.
That’s when the Mabry Kate Webb Act takes effect in Tennessee.
They were the driving force behind the bill, which requires that newborns in Tennessee be tested for metabolic and heritable conditions such as Krabbe.