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Gift of a lifetime

"Gift of a lifetime" Continued...

Issue: "Return of the Lion," May 17, 2008

The Pearls were scheduled to meet their donors and their donors' families at a "Thanks Mom" Celebration of Life fundraising gala in St. Louis, Mo., on May 10. Diane said, "I just want to give them the most memorable, loving weekend that we can possibly do. There's just no store where you can go buy something for someone who saved your child's life." Meanwhile, the National Marrow Donor Program is sponsoring a bone marrow registration drive this month with the goal of adding more people to its registry.

This month the Pearls' lives include not just doctor visits but fundraisers and more bone marrow drives. Alex and Matt's older brother, Austin, 32, has no medical problems and has come to St. Louis to help his family and spend time with them. "Living with FA is like always having the radio on," dad Mark said. "Sometimes it's really loud and it takes control of your life, but sometimes it's just there in the background and it's quiet. And you can get through life and it's there, but it's never gone. . . . You choose to either stand up and fight it and try to make a difference and make things better, or you can crawl in a corner and get in a fetal position and give up. And there's just no way that we can give up."

Diane doesn't deny that it's difficult: "You don't want to be different. I never wanted a calling. I just wanted to be like everybody else." But she said living with Fanconi anemia has taught her not to miss little blessings: "Don't say 'maybe tomorrow' or 'I'll do that next week.'. . . We're devoted and honored to be their parents and take that time now."

Diane said the biggest blessing is the people they've met through their children's illness, especially the people the Pearls have introduced to the faith that keeps them going. Diane said people who came to their first church drive came back to the church "and found God." She remembers one man in particular: "He became a believer and ended up having triplets, losing one of them and calling us when they were born saying, 'Would you pray with me and would you help?'" The man and his family now go to church with the Pearls.

Diane said that Matt's donor, Annette, is another person who has changed: "She has told me it's changed her life and it's made her a better person and a better mom. . . . She is trying to lead her whole family to Christ by our example and by Matt's strength and spirit. . . . It shows me why God picked her and why God picked Matt."

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