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Campbell, Mo., parents seek more newborn tests after son dies from rare disease
CAMPBELL, Mo. -- Brady Cunningham was once all baby fat and blond curls. But after the cooing, smiles and studying looks of his first months came endless crying, intense pain and unexplained tremors.
In the months before his life ended Monday -- at home, in the arms of his parents and days before his first birthday -- Brady's pain was at times so fierce, his father said, that the boy developed six-pack abdominal muscles from the straining.
Brady had been diagnosed with Krabbe disease, a rare and incurable genetic condition that left him unable to sit up, swallow or smile. During a recent visit to the family's home in the Bootheel town of Campbell, Brady's parents took turns holding their son on a couch, periodically using a suction machine to clear out his mouth.
Dustin and Jessy Cunningham say it was months before their son was properly diagnosed, and they're using their son's case to press Missouri legislators for a law requiring Krabbe screenings for all newborns.
"It makes you bitter," Jessy Cunningham, 21, said days before Brady died. "They told us if they caught it at birth, there were two procedures that could have been done to save his life, a cord blood transfusion or a bone-marrow transplant. And Missouri doesn't have that law yet?"
Doctors say if Krabbe is diagnosed quickly, interventions can improve the chances of a normal life. But once symptoms show up, it's too late for effective treatment.
In New York, where the condition was highlighted after the son of former Buffalo Bills quarterback Jim Kelly was diagnosed with Krabbe and later died, newborns have been tested since 2006. Illinois passed a law in 2007 to expand its screenings to include Krabbe and a few other rare conditions by 2010.
In Missouri, a tiny amount of blood is taken from a baby's heel a day or two after birth to test for 67 disorders ranging from cystic fibrosis to sickle cell disease. But not Krabbe.
The Cunninghams' hometown representative, Democrat Tom Todd, introduced a bill requiring Missouri to test for Krabbe and four other conditions known as lysosomal storage diseases: Pompe, Gaucher, Fabry and Niemann-Pick disease by July 1, 2010. Lysosomal storage diseases are a group of roughly 40 diseases, each characterized by a specific enzyme deficiency.
About 80,000 infants are born each year in Missouri, and the state Department of Health and Senior Services estimates the additional screening for the five diseases would diagnose eight to 10 infants annually and cost the state about $1 million.
Newborn screenings currently cost $50 a child, and expanded testing would cost roughly another $13. Getting the right equipment and doing pilot testing for the new screenings would take two years from the time funding becomes available, officials say.
"To me, there's no dollar amount that equals a child's life," Jessy Cunningham said.
Brady was born April 16. At first the only sign of trouble was a strange tremor in his arms. Doctors said the boy had an immature nervous system, and that the shaking would soon subside. It didn't.
One hospital sent the family home with physical therapy exercises, but his parents knew that wasn't enough.
They came finally to St. Louis Children's Hospital last August. Genetic testing revealed Krabbe, which strikes about 1 out of 100,000 newborns in the United States and is generally fatal before age 2.
The condition causes the nervous system to deteriorate, triggering muscle spasms, irritability, loss of development skills, mental retardation, blindness and early death.
Dr. Joanne Kurtzberg, director of pediatric blood and marrow transplantation at Duke University Medical Center, said she and a team have treated 17 babies with Krabbe before they showed symptoms. Of those, two died after treatment. But of the 15 who lived, about a third live normal lives, about a third walk with assistive devices and about a third are unable to walk.
The oldest is 14, and the children show "normal intelligence, play games, go to school," Kurtzberg said.
The bill to implement the additional screening has cleared the committee stage, and is ready to be heard on the House floor.
Brady's family made sure he got a chance to experience childhood joys despite his illness. They celebrated his birthday each month when they didn't know if they'd be able to mark the years.
One corner of their family room was decorated with toys and bedding from the animated "Cars" film, which Brady watched during a hospital stay. He murmured from time to time, but could not visibly communicate with those around him.
Medication kept him comfortable and helped him sleep at night. His parents fed him formula and rice cereal, using a syringe to direct the food through a surgically placed port in his abdomen.
They relied on family and friends who came almost nightly to give them a break or help with Brady's care. Happier times included frequent trips to the park, and even a visit to Florida for stops at Disney World and Sarasota, where Brady and his parents put their feet in the Gulf of Mexico.
Brady also made a stop at the Missouri Capitol in support House Bill 716, the Brady Alan Cunningham Newborn Screening Act, wearing a "Don't Be Shady, Pray for Brady" T-shirt. No one spoke against the bill, at least not in front of the Cunninghams.
Said his father, Dustin: "They don't really have much of an argument."
The bill has cleared the committee stage, and is ready to be heard on the House floor.
On the Net:
Mo. House Bill 716:
Hunter's Hope Foundation: http://www.huntershope.org/