Missouri Family, Still Grieving, Sees Newborn Bill Signed

Last Wednesday, Governor Jay Nixon took his pen to a bill that requires newborns to be screened for five additional rare diseases. All of them fall under the category of lysosomal storage diseases: that’s when the body’s lysosomes malfunction and don’t process unwanted material into substances that the body’s cells can use. KSMU’s Jennifer Moore spoke with one individual who personally lobbied for the bill.

One family who made the trek to the Capitol for the signing cermony was the Cunningham family of southeast Missouri. Earlier this year, their 11-month-old son, Brady, died from Krabbe disease, for which there currently is no cure. Krabbe disease is one of the five disorders every infant born in Missouri will now be tested for.

Brady’s Cunningham’s mother, Jessica, joined us by telephone to talk about why she and her family worked so diligently to get the bill passed.

Cunninham said children with Krabbe disease normally live up to two years of age, but if a child is diagnosed at birth, they can get a cord blood transfusion or a bone marrow transplant, which will stop the progression of the disease. With that kind of treatment, she said, that child has a good chance of living a normal life.

She and her husband, Dustin, took their son, Brady, to the Capitol building for a hearing on the bill. Cunningham said she knew that if lawmakers looked her son in the eye, and realized what kind of pain he went through, there would be no way they could say "no" to the bill. Cunningham says she and her husband took Brady everywhere they went.

She added that she and her husband both believe that Brady was born for a purpose, and that his purpose was to help save other childrens' lives.

As of this summer, Missouri law will require that all newborns be screened for Krabbe disease, as well as several other lysosomal storage diseases.

Missouri already requires that babies be screened for 67 diseases. The Show-Me state now becomes one of the few states checking for lysosomal disorders in newborns.

For KSMU News, I'm Jennifer Moore.