Imagine facing the devastating diagnosis that your child has a rare condition that is fatal if left untreated…twice. For Julie and Brandon Williams, their worlds were turned upside down when both of their children, Luke and Molly, were diagnosed with myelodysplastic syndrome (MDS).
MDS occurs when the production of blood cells is disrupted, causing them to die. Over time, MDS leads to anemia, infections, and, in most cases, leukemia. It is normally found in older adults and not thought to be genetic, which makes Luke and Molly’s cases even rarer.
Luke was less than a year old when he developed an respiratory syncytial virus (RSV) infection. Doctors kept him in the hospital overnight because of abnormal blood test results. Many tests and a bone marrow biopsy later, Luke was diagnosed with MDS in March 2006.
Referred by their hometown physician in Foreston, Minn., Julie and Brandon brought Luke to University of Minnesota Amplatz Children’s Hospital, where he received chemotherapy and a single umbilical cord blood transplant in April 2006. Luke responded well to the intensive treatment. “Luke is a typical boy,” says Julie. “He loved to play catch in the hospital.” Now a first-grader, Luke will have to be tested annually for the rest of his life, but the longer the disease stays dormant, the less likely he will relapse.
The joy of watching Luke respond well to treatment was tempered by the diagnosis four years later of 2-year-old Molly in May 2010. Julie detected that something was wrong when Molly began developing bruises on her legs. With the family’s medical history, physicians were able to diagnose Molly within days.
Treatment has gone well for Molly—a preschooler who loves to dance and wear fancy dresses—but she has had her share of complications, which continue to put her back in the hospital. Nevertheless, the family is supporting ongoing University research by participating in studies to evaluate the effectiveness of single cord verses double cord transplant, and test their children for a genetic link to the disease.
“There were many kids before Luke and Molly who were part of research that helped our children,” says Julie. “We want to give back in the same way.”