The nightmare began a year ago this month for Joe and Janet Joiner whose oldest boy was a second grader at Cooper Elementary. Both their boys seemed perfectly healthy, but they tested positive for the same rare disease, Metachromatic Leukodystrophy, or MLD.
MLD is a genetic disorder that erases an enzyme that feeds the brain so normal brain cells begin to deteriorate. Both boys were rushed to Duke Medical Center for stem cell transplants, which was their only hope for a cure.
Two-year-old Ross Joiner died in February of complications from his transplant and on Monday night, 8-year-old Trevor Joiner died at home, following two transplants that were both unsuccessful.
In an e-mail to friends and family, Janet said about Trevor, "We know that he is finally delivered and that he is running and laughing with Ross this very moment. We are sure that Ross was very excited to see him."
Dr. Doug Klepper was at the Joiner house when Trevor died. He describes Janet and Joe as heroic for what they have been able to do as parents. "They're probably the most heroic people I know because they had the conviction to go ahead and let these boys go through this process. This is the worst nightmare for any of us as parents would ever have but they had the courage to say we're going to give a fighting show, we're going to go ahead and transplant them, we're going to give them a chance to be normal and when its time for them to go we're going to let them go."
Funeral services for Trevor Joiner are scheduled for Thursday at 10 a.m. at Indiana Baptist Church.