POWELL (WATE) – Kyle and Christin Webb’s nine-month-old daughter a rare genetic condition that usually takes the life of a child before the age of two. The family is now expecting their second child who is also diagnosed with the same disease.
The Webbs are trying to get a bill passed for newborn screening for Krabbe disease in Tennessee.
The fatal degenerative disorder, similar to Lou Gehrig’s disease, affects the nervous system. There is no cure for the disease, but if caught early, the child has a chance at a normal life through special treatment.
In November, WATE 6 On Your Side interviewed the family about their efforts to bring attention to the rare genetic disorder.
The Webb’s story has taken on new significance. Christian is now 23 weeks along with a little boy she and her husband plan to name Owen Baxter.
The unborn baby has just been diagnosed with Krabbe disease.
Big sister Mabry Kate’s symptoms began at three months. The little girl might have been able to avoid symptoms if she was screened for the disease as a newborn.
“The most devastating thing about her disease is that she has already progressed so far in the disease when we got the diagnosis,” said Christin. “There’s nothing that we can do so it’s been really hard to accept the fact that we could have done something for her had we known, but now it’s too late.”
Newborn screening which includes a simple blood test for different diseases, including Krabee, is mandatory in New York and Missouri. Most recently Illinois, New Mexico, New Jersey and Pennsylvania passed legislation to add it to newborn screening panels.
The Webbs will be traveling in March to Duke University Medial Center, where Christin will give birth to her son and where a plan is being put into place on how to treat the little boy to give him a chance.
Their strong faith is seeing them through.
“I just don’t see how you can get through times like this without that kind of faith– there’s just no hope in anything,” said Christin.
If you would like to learn more about expanding newborn screenings in Tennessee, visit Hunter’s Hope website.