Connecting for a cure
Monday, January 28, 2013
Maggie Wiederholt of Walcott, Iowa, battled debilitating illness for most of her young life. But she was determined to make a difference, and her death at age 12 marked the beginning of an effort to help Maggie's final wish come true: solving the riddle of a rare autoimmune disorder called Behcet's disease.
Maggie's condition was diagnosed by Dr. Polly Ferguson, her pediatric rheumatologist at UI Children's Hospital. Behcet's is still a mystery, and Maggie knew her tissues might provide valuable clues. "Maggie told me I needed to figure out what had happened to her," Dr. Ferguson remembers. "She was incredibly persistent." To start, Maggie's genome would need to be sequenced, which at the time of Maggie's death in February 2010 was an expensive procedure.
In April 2010 the Quad-City Times published a feature series called "Maggie's Choice." When the stories appeared in the newspaper's online edition, they were spotted by someone outside Iowa who also suffers from Behcet's disease—and who shares Maggie's determination.
By December, 2011, that individual, who prefers to remain anonymous, had made three gift commitments totaling $50,000 to UI Children's Hospital to fund Dr. Ferguson's research. She has now completed sequencing key sections of Maggie's genome; the next task is to examine family members' DNA to see if Maggie carried unique genetic variations.
"This was such a heartwarming and generous thing to do," Dr. Ferguson says of the donor. "Beyond funding our research, it helped soften the blow of Maggie's death and has meant a huge amount to her family—more than the donor will ever know."