Anaheim, Calif. -- Mark Leiter stares hard at a photograph of his infant son and burns it all again into memory. The last day. The last hug. The last smile.
It's all there in one seemingly ordinary baby picture, taped inside a locker at Anaheim Stadium like all the other family photos in all the other lockers in the California Angels' clubhouse.
"It's really hard," Leiter says quietly, still looking into those innocent eyes. "I really believed Ryan might make it to his first birthday."
The ballgame is just 45 minutes away, but it's just a ballgame now. It's not life and death anymore, because the Leiter family -- Mark and Allison and their first son, Markie -- have become far more familiar with real life and real death than any young family should.
It has been 2 1/2 months since 9-month-old Ryan Leiter left this earth, the victim of a rare affliction known as spinal muscular atrophy. His parents still are coping with a grief too crushing to put into words, and yet they have tried to do that time after time in an attempt to help other families in the same situation.
They didn't really want to go public with their tragedy, but Mark's stature as a major-league pitcher afforded them an opportunity to reach thousands of people and raise thousands of dollars to pay for research that might lead to a cure for SMA.
So Mark and Allison have accepted nearly every interview request, hoping that their efforts to build the Ryan Leiter Fund will give added meaning to a wonderful life that was far too short. Their story has been told in newspapers, on national radio ("Costas Coast-to-Coast") and recently on ESPN's "Up Close," where they appeared along with Orioles utility infielder Tim Hulett, who lost his son Sam in a tragic accident two years ago.
Spinal muscular atrophy, also known as Werdnig-Hoffmann disease, strikes about one in every 20,000 babies born in the United States. It is caused by a genetic defect that must be carried by both parents, and cannot be detected until a child is born with the disease.
The symptoms are similar to amyotrophic lateral sclerosis, the degenerative muscular disease that struck down baseball great Lou Gehrig, but spinal muscular atrophy strikes during infancy. Ryan Leiter, born a seemingly healthy 9 pounds, 4 ounces after a textbook pregnancy, began to exhibit symptoms at about a month old. The disease was diagnosed last September.
"Sept. 1, when we found out, we were really hurting," Mark Leiter said, "but then we realized that we had to enjoy the time we had. You go through a guilty stage -- Why did we have to bring another child into the world? -- and to see him suffer like that, it really hurt."
It put everything into perspective, including a rocky baseball career that began in the Orioles' organization in 1983 and looked as if it might end during spring training this year. Leiter was released by the Detroit Tigers on March 18, a little more than two weeks before his son died, but there was no time to wallow in a career crisis or curse the cold edge of baseball's business side. It didn't seem very important at the time.
"I just gathered my mail and went home," Leiter remembers. "I got home and put Ryan on my shoulder and started reading my mail. My wife came in and said, 'I can't believe you're so calm.' I said, 'Allison, look at this. I'm holding my kid. Who gives a [bleep] what happens with baseball?' But she was really feeling bad for me."
Leiter already had known professional hardship all too well. He was a promising pitcher in the Orioles' organization until a series of shoulder injuries sidelined him during all of 1986, 1987 and 1988. He fought back to make the major leagues with the New York Yankees in 1990, then spent three seasons in Detroit before the Tigers let him go.
That part of the story ended happily. After the Tigers dropped Leiter, the Angels were right there to catch him. He made good in a couple of late-spring outings and was set to open the season in the rotation.
Ryan Leiter died Opening Day. He passed away just a couple of hours after Mark boarded the team charter to Minnesota to begin his career anew. He died peacefully in his mother's arms, and Allison -- despite the pain -- will tell you that it was as happy an ending as they could have hoped for.
"I used to pray for him to get well," she said. "When he was 6 months old, I started praying for the strength to get through it. Then, at 7 months, he quit breathing. He died, but we got him back. It was kind of scary. I looked at him and I could tell that he didn't want to be here anymore. Mark said that the only reason he was staying was because I wouldn't let him go. From that moment, I just prayed to God to show me something magical. Please let it happen in a way that I know he's going to you."
Allison says her prayer was answered in the parking lot at Anaheim Stadium.
Mark was getting ready to board the airport bus to begin the season-opening trip to Minnesota. He hugged Markie. Then he picked up Ryan, sensing that it would be the last time they would be together.
"He looked real bad," Mark said. "I said to Allison, 'He's not going to make it through the day. Maybe I should stay home.' But she said I couldn't do that, because it could go on like this for another three months. I was hugging and holding him, and I said, 'I'm never going to see him again.' "
Mark put Ryan back into the car and reached for his wife. They said their goodbyes and embraced, then looked down to see their dying son smiling approvingly. It was the sign that Allison had prayed for.
"It was like he was saying, 'You guys are going to be all right,' " she said. "He left us two hours later."
The hurt never will go entirely away, but Mark and Allison Leiter have chosen to carry the burden of their grief in public so that other families will not feel so alone. On July 2, they will join some of those families at Camden Yards for an evening to raise money for the Ryan Leiter Fund and Families of Spinal Muscular Atrophy, a support organization that pays for research and helps families in need.
"We had no intention of going public," Allison said. "Then, all of the sudden, everything started to fall into place. Ryan lived only a few months, but his purpose was fulfilled. For nine months, he had a quality life."
RYAN LEITER FUND
The Leiters have chosen to share their story in the hope of raising money for SMA research and to help families who have been financially overburdened by the disease. Contributions can be sent to the Ryan Leiter Fund, c/o Families of Spinal Muscular Atrophy, P.O. Box 1465, Highland Park, Ill., 60035. For more information, call (800) 886-1762 or (708) 432-5551.
WERDNIG-HOFFMANN DISEASE
Werdnig-Hoffmann disease, also known as spinal muscular atrophy, is an infantile disease that strikes about one in 20,000 babies each year. The symptoms are similar to those of amyotrophic lateral sclerosis (Lou Gehrig's disease), an incurable neuromuscular disorder that afflicts adults, and always is fatal. SMA is caused by a genetic defect that must be carried by both parents, but scientists have not been able to isolate the gene, so it is not possible to know a parent carries it until an afflicted child is born. It is estimated that one in 40 people carry that gene.