Orlaith and Ciaran Staunton speak at the sepsis forum they organized in Washington, D.C. last week.Jay Premack Photography

Tommy Fitzgerald was the kind of kid every parent would love – smart, athletic and loving.

He was a top student, a piano player, a great athlete who loved track and field and baseball, in which he was a standout.

His dad Ken Fitzgerald is a pilot with U.S. Airways. The man, whose mother hails from Co. Meath, can hardly speak about his son without his voice breaking.

“He was just one of those gifts from God,” he said. “That’s probably why he’s not here with us anymore. He was just a really good kid.”

Tommy died after suffering a scrape on his knee during a little league baseballgame in Gilbert, AZ, a suburb of Phoenix.

Doctors misdiagnosed the infection that Tommy got from his knee scrape and the boy died of sepsis a few weeks later. Incredibly, they never contacted the family directly after blood tests showed a raging infection, and by the time they tried to treat it it was too late.

Ken Fitzgerald was in Washington, D.C. last week with his other son Kenny to stand with other parents and relatives of sepsis victims. My sister Orlaith and brother-in-law Ciaran Staunton were there too, as was Irish Ambassador to the U.S. Anne Anderson and a group of medical experts from all over the U.S.

Orlaith and Ciaran lost their beloved boy Rory to the same disease, in eerily similar circumstances. He suffered a scrape playing basketball and was also misdiagnosed and sent home from the hospital. Three days later, on April 1, 2012, he was dead, at age 12 – our lovely, laughing boy.

Like all the families at the conference, which was organized by the Rory Staunton Foundation, we had never heard of sepsis until it struck one of our own. It is, fundamentally, an out of control immune response to a minor infection.

The lack of knowledge about sepsis is frustrating. While America seems fixated on Ebola, which has not killed in the U.S. yet, about a million people a year are affected by sepsis and up to half of them die.

Carl Flatley, a dentist in Florida, led the first fight against sepsis after his beautiful daughter Erin died from it in 2003 after a minor medical procedure.

Like the Stauntons and Fitzpatricks, he was in Washington last week to call for an action plan for a disease that can be combated if recognized in time.

Early antibiotic use can cure sepsis, but medical authorities in the U.S. have been deeply negligent in not getting the word out there.

Last week’s conference was a start. Dr. Thomas Frieden, head of the Center for Disease Control, spoke at the conference and finally pledged to take action.

Until pushed by the sepsis families, the CDC website never even mentioned the disease even though it kills more Americans than breast cancer, prostate cancer and AIDS combined.

When action is taken it can have a profound impact. North Shore LIJ in New York has cut sepsis rates by 50 percent under the leadership of CEO Michael Dowling, who is a Limerick native, and his dedicated team of doctors.

At the conference families from as far away as Nebraska, Iowa, Florida and Arizona shared the pain of their experience of a loved one dying from sepsis or being severely incapacitated.

Their fervent wish was that no other family suffers. Thanks to their bravery and outspokenness there is a much better prospect that will be so.