Gift of a lifetime

Two years ago, when 9-year-old Matt Pearl was in the hospital to receive a bone marrow transplant, St. Louis Cardinals first baseman Albert Pujols gave him an autographed baseball. Matt donated it to a gala to raise money for a Ronald McDonald House and arrived at the gala in a wheelchair. When the bidding on the ball reached $3,500, Matt walked to the stage, took the ball, and said, "I just want to hold it one more time." The bidding then went up to $20,000. When Matt handed the ball to the winner, the winner handed it back.

That was the latest of many one-to-one gifts. This story started in 1995, when Diane Pearl gave birth to her second child. The line on Diane's electrocardiogram went flat and doctors struggled to save both Diane and her baby girl Alexandra, born premature and still not breathing.

After doctors revived Diane, they listed Alexandra's medical problems: hearing-impaired, hand and thumb abnormally shaped, no anal area, only one kidney; she would probably never walk, talk, or eat on her own. In the middle of that night, Diane woke up dazed and sedated. She fell to her knees trying to get out of her hospital bed. She said something kept her there as she demanded of a God who had always seemed distant just what she was supposed to do now. Then, in her desperation, she said she found a will to believe that she'd never had before. She prayed, "Please give me the faith and the strength and the courage to take care of this child You gave me."

God gave the Pearl family another child 21 months later-but Matt also was born hearing-impaired, with one kidney, hip dysplasia, and hand abnormalities. Diane quit work and spent her time on doctors and therapies. In December 2000 she and her husband Mark rushed Alex to the hospital, where doctors pumped her full of platelets and red blood cells, and surgically inserted a catheter into her neck and chest to administer medications and draw blood. One more week without treatment and Alex would have died: Doctors finally diagnosed her (and Matt) as having Fanconi anemia, an inherited blood disorder that usually leads to leukemia.

Alex received a bone marrow transplant in May 2001, but her body didn't accept the donor cells at first, so doctors slowly gave her the donor cells month by month for a year: Her body finally engrafted as they used the last bag of donor cells. Meanwhile, Matt was having a hard time finding a compatible marrow donor. So by starting in their own church the Pearls worked on adding more potential donors to the National Marrow Donor Program's registry. The drive added 2,475 people to the registry.

During the almost six-year search for Matt's donor, the Pearls' campaign added approximately 100,000 people to the registry: Today 7 million people are registered in America and 11 million worldwide. The Pearls heard from 100 people, including Matt's third-grade teacher, who saved a life by donating their marrow. Matt went to many donor drives, assuring potential donors that they faced only "a cold wipe and a quick stick." He held registrant's hands while they got their blood tested, held the cotton until it quit bleeding, and put on their Band-Aids.

By 2006 the Pearls still didn't have a perfect tissue type match for Matt and he was getting sicker, so they settled for a close but not perfect match. Matt received his transplant in June-at the start of a hospital stay that would last 120 days and twice bring him near death. The immune cells of the transplant attacked his body, and the steroid medications he then had to take killed the bone tissue in his right hip and left him limping.

Matt and Alex are still in recovery. Alex, 13, is only 52 inches high and weighs only 79 pounds. Matt, 11, is the same height and weighs 48 pounds. Matt is still in physical therapy for his limp, and the doctor is pushing for surgery that will mean a body cast and wheelchair. Alex and Matt each have only one kidney so they can't play contact sports, although Matt practices and works out with a team that's made him a member and bat boy. The average Fanconi anemia patient-even after receiving a successful transplant-lives to 22 years old.

"There is no such word as normal in our family," notes Diane. But like other girls her age, Alex loves Hannah Montana and American Idol heartthrob David Archuleta. She has a 4.0 GPA in school, where "they tell me that she lights up their world every day," says her mother. Matt, who started school full-time this year, has started riding the bus home and walking half a block to the house. "We were just sitting outside watching them ride their bikes up and down the street," Diane said. "God is so good."

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."