From Calif., an Angel helps local SMA chapter

July 06, 1994|By Mary Gail Hare | Mary Gail Hare,Sun Staff Writer

Barbara Trainor felt instant empathy for the family interviewed on "Good Morning America" in March. She knew from painful experience what they were going through.

Mark and Allison Leiter appeared on the television program to discuss spinal muscular atrophy, a genetic disease that afflicted their infant son, Ryan. Barbara and Gene Trainor of Hampstead lost their infant daughter to SMA in February.

"They were so much like us in so many ways; their thoughts were the same as ours," she said. "She held her child the same way I held Erin. She turned him to the camera and said, 'See how beautiful his face is.' "

The Leiters' son died the day after Easter.

"We were not the only family whose life was totally disrupted by this little-known disease," said Mrs. Trainor.

Once the Leiters and Trainors became acquainted, the families wanted to "do something together." Mr. Trainor and Mr. Leiter, who is a pitcher on the California Angels, came up with the sports connection. "Gene thinks every child should be able to get to a ballgame," Mrs. Trainor said.

The couples organized an event that gave several local SMA families an opportunity to share their experiences and for the children who are surviving with SMA to watch a game and meet players. About 50 children in Maryland have the disease.

The Leiters helped the Trainors kick off the Chesapeake Chapter of the Families of SMA on Saturday at Oriole Park at Camden Yards before the Orioles played the Angels.

"We had 11 families and a lot of sharing," said Mrs. Trainor. "When we decided to start a chapter, the work helped us get up in the morning. We wanted to help others get through this pain. I have to make sense of this. The organization helped me work through grief."

Through the Chesapeake Chapter, the Trainors hope to raise money for research. They plan to distribute the national newsletter for Families of SMA and to contact every pediatric neurologist in the area to "let them know we are here for families who need us."

"Erin's life gives us the direction to start this organization," she said. "She had a strong purpose in her life. Founding a chapter gives us a purpose, too."

The newest chapter hopes to continue its activities to fund research for a cure as well as increase public awareness.

"Erin's birth and passing were not for naught," she said.

The organization, which has six other chapters across the United States, can also help parents rent medical equipment and keep them apprised of the latest treatments.

"The newsletters are a good source of information," she said. Information: 239-9415.

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