The Colgate Scene
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|Building a foundation to save lives|
|by John D. Hubbard|
The Lazzaro family, from left, Sam, Tom, a portrait of James, Jamie and baby Anna.
Tom and Jamie Lazzaro are busy.
There's work, the kids -- Sam and Anna -- and the James William Lazzaro Foundation for Genetic Metabolism Disorders to run.
It began with the call that every parent dreads. In August of 1997, Jim, their healthy eight-month old, awoke from his morning nap but then stopped breathing. Efforts to revive Jim at the Bloomington Hospital in Indiana failed.
"It was an out-of-body experience," says Lazzaro '86 of the days following his son's death. Sam, then two and a half, needed attention, a blessing during those tormenting days.
"We were both thankful to have Sam running around," says Lazzaro, who acknowledges life goes on but in a very different way. The initial medical reports offered little solace, though.
An autopsy seemed to point to Sudden Infant Death Syndrome. The nebulous finding only deepened the Lazzaros' sense of emptiness. A couple of anomalies had been discovered, however -- fatty deposits the pathologists couldn't explain and an enlargement of the heart.
The questions, and the fact that Jamie was pregnant again, inspired the Lazzaros to find answers. Tom and Jamie began researching, haunting libraries, writing for information, surfing the Internet. In cyberspace Lazzaro came across an article on fatty acid oxidation disorders with results that echoed those in Jim's report.
Lazzaro brought the information to the attention of the Bloomington pathologists, who in turn contacted the Institute for Metabolic Disease at Baylor University Medical Center in Texas.
A study there of tissue samples revealed Jim had died of Very Long Chain Acyl-coenzyme deficiency (VLCAD), a disorder affecting fatty acid oxidation that normally takes place inside the cells of the liver and other tissues for energy production. The parents also discovered they both carry the recessive gene for the metabolic disorder, which isn't as rare as once thought. The couple further learned the disorder, in its most common form, can occur in one of every 23,000 births -- roughly the same as four or five other diseases that are screened for routinely.
From a single heel prick and analysis of the chemicals in the blood it is possible to identify nearly 30 inherited diseases. Not only are fatty acid disorders relatively simple to identify, they are highly treatable.
The Lazzaros had Sam tested for VLCAD and the results were negative, but since Jamie was pregnant, concerns still loomed.
"The people at Bloomington Hospital were all on super alert. That's when it hit us -- people would come through," Jamie Lazzaro told the Bloomington Herald-Times. "The doctors and nurses present at Jim's death were there for Anna's birth." The baby girl tested negative, too.
Rebecca Wappner, an authority on genetic metabolism disorders at Riley Hospital for Children in Indianapolis, has seen only four to six patients with the same very long chain form of the disorder that Jim Lazzaro had. In that rarer form, the disorder strikes at an earlier age -- typically six months -- and is more severe. According to Wappner the most common symptoms of both forms of the disorder are lethargy, hypoglycemia and inability to tolerate fasting or stress resulting from a cold or flu.
While Jim had been a robust baby, he had also had common childhood episodes of illness.
"That's what's so difficult," Tom told the Herald-Times. "It's usually not the first time they get sick. It's typically when they're fighting a cold or fever."
While fatty acid oxidation disorders are characterized by an acute illness -- lack of knowledge and information may mean as many as ten out of 100 fatalities attributed to SIDS might actually be a result of the disorder.
The Lazzaros created the foundation that honors their son to promote national mandatory testing and to raise funds to make that happen on a state-by-state basis.
"It's a major undertaking," admitted Lazzaro. "Family and friends are what we are relying on now. The Colgate network will be big, too. It's a little humbling, actually. You forget how many friends you have."
The testing is effective, simple and not expensive, but the political manuevering is tricky and the health care labyrinth not easy to negotiate. Still, the effort is "a way to stay close to Jim," said Lazzaro. Tom and Jamie talk to insurance companies about getting the test approved. They speak to local civic groups and do media interviews.
"People have wanted to know how they could help," said Tom, and the foundation is the perfect way.
"It will never bring Jim back, but if we can prevent someone else from going through this, it gives it a silver lining."
The Lazzaros, who both work for General Electric ("G.E. has been great"), were transferred to Louisville recently. Jamie has taken a leave, Sam is rambunctious and Anna is about eight months old now.
"You see how alive and robust she is and it makes you appreciate life," said Tom Lazzaro.
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