There's always a faint crease of worry between Tracy Leonard's brows.
"He can hold that face for hours," his father said. "I've never seen a kid who can frown so long. He wouldn't even smile for us on his birthday."Tracy's third birthday was seven days ago. Unless a New York hospital decides to attempt what has never been done, that birthday will be his last.
Looking at Tracy's furrowed brow and somber eyes, one wonders if somewhere in his still-new soul, he doesn't know that. The little boy with the headful of hair that sticks out in every direction ("He's had a million different haircuts, trying to find one that will hold his hair," his mother said) will probably not live to see spring.
Tracy's features are flawless, their beauty reflecting the best of his unusually handsome parents. He's tiny. The Mickey Mouse sweater he got for Christmas drowns him. The sleeves are rolled back to reveal perfectly formed hands.
Nature got a fine start on sculpting Tracy Leonard. But it got terribly mixed up over some of the important parts. His heart should be on the left side of his chest. It's on the right. It should have two ventricles. It has only one. The atrial-ventricular valve should close after each heartbeat. It doesn't.
And nature completely forgot the spleen - an organ critical to Tracy's defense against infection.
The Payson youth has so many things wrong that the doctors can't help any more.
They've tried. Tracy has had heart surgery three times. The surgeries, the infections, all the pricks and pokes and pain etched the anxiety on Tracy's face.
"He's petrified of people," his mother said. Too many people have done too many things that hurt him. When asked if he would like to have his picture taken, Tracy slid out of his chair and ran to his parents. Hospital technicians tell him they're taking a picture of him when they take X-rays, his mother explained. Now Tracy hates cameras.
Someday soon, Tracy may never have to be afraid again.
Three days before Christmas, doctors told Tracy's parents the pricks and pokes had come to an end. There were no more options left. Tracy was going to die. "They said we could take him home and wait," Judy Leonard said. "They don't know how long he has. They estimate it's two months. But they don't know for sure. They've never had a case like this one to look back on."
One could live 100 years and never be old enough to lose a child. That kind of "old enough" doesn't exist. The added years and maturity don't dilute the grief or shrink the gaping wound in the soul.
But the parents who post an anguished watch over this fading child have scarce left their own childhood behind. Tracy's father, Chad, is 20. Judy is 22.
Tracy is the second of three children. Judy has a 4-year-old son, Tyler Beagley, from a previous marriage and the couple have a 1-year-old daughter, Aubree.
This small family is all that Tracy has dared love. "Tracy doesn't really have friends," Chad said. "This summer he sat on the porch and watched the kids play. He couldn't keep up with them."
The children in the neighborhood are gentle with Tracy, Judy said. But he feels apart. "This summer he had to wear oxygen all day, so he felt really different from the kids," she said. "I would take his oxygen off so he could play for an hour, but he still felt left out."
This weekend Tracy will forget that he's different and do what every normal youngster longs to do. He's going to Disneyland. After the doctor told Judy and Chad that their son was dying, he gave them the phone number of the Make-A-Wish Foundation and urged them to take their boy to Disneyland.
The foundation flew Tracy, Tyler and their parents to California Friday afternoon. Aubree stayed behind with relatives.
Tracy will finally get to see Mickey Mouse and Pluto. Next to his family, Mickey Mouse and Pluto are his two favorite people.
When the Leonards come back in four days, they hope to hear good news from a New York hospital they contacted about a transplant. It's a faint hope. Half of the children who receive transplants die from infections, Judy said. And those are children with spleens. Because Tracy doesn't have a spleen, he couldn't survive a post-surgery infection. So the family is seeking a heart and spleen transplant.
Loma Linda Medical Center - one of two hospitals in the country that would do such an operation - has already turned the Leonard family down. Surgeons have never attempted to transplant a heart and spleen into a child before, Judy said. Besides, the surgeons aren't sure how to transplant a heart into a side of the chest it has no business being in.
New York is Tracy's last chance. But he doesn't know that. While his parents wait for word, he will check out Mickey Mouse, track down Pluto, and go on lots and lots of rides. He will play in the sun and have his cow-licks ruffled by a balmy breeze.
For four days, he will romp in the sunlight and warmth. He will experience in California the brief springtime he may never live to see in Utah.