It never came.

Thomas Russell Fitzgerald, 4, died Wednesday. A year ago, doctors diagnosed Thomas with Fanconi’s anemia, a rare genetic disorder he had had since birth, of which only 1,500 cases exist in the United States. Symptoms include deformed or missing thumbs, misaligned wrists and digestive problems.

Thomas was the 1999 poster child for NBC 6’s Marrow-Thon.

Since December, Adele Fitzgerald has stayed at UNC Hospitals in Chapel Hill and Michael Fitzgerald has juggled between the hospital and his Charlotte job for Alternative Resources Commission, a computer services contractor in Charlotte.

Now Michael Fitzgerald has some advice for other parents who can only stand by as their children struggle through fatal illnesses.

“Whether it’s this, leukemia, bone marrow cancer — whatever — do what you have to do and don’t apologize for it,” he said. “If you need to go public because you don’t have the resources, do it. If you want to stay private, do it as long as you keep your support.”

The Fitzgeralds also say parents should not become overly obsessed with their child’s illness.

“While we were there, we saw families that were bunkered in,” Michael Fitzgerald said. “That’s not good for the parents. It’s not good for the child. This kind of thing, it’s a marathon. It’s not a sprint.”

Thomas’ room, where he spent his last 11 weeks, cost $1,157 a day, his father estimates. The family spent thousands more for blood transfusions, scans, three surgical procedures, lab work. In all, the medical bills will surpass $100,000.