ABOUT THE CONDITIONDenys-Drash syndrome is characterized by abnormal kidney function, a cancerous tumor of the kidney called Wilms tumor and disorders of sexual development in affected males. DDS is a genetic disorder caused by mutations in the Wilms tumor suppressor gene, WT1.Source: National Organization for Rare DisordersHOW TO HELPFor more information about Shafer Daves or to donate to his medical fund visit www.cotaforshaferd.com.
The phone call came at 6:30 p.m. the Friday before Labor Day. We need to see your son at Vanderbilt tonight, the doctor told them.
Before the phone rang, it had been a normal day of laughter, school art projects, lunch and meetings, plans for a long weekend and family visits, with pauses long enough to give 2-year-old Shafer doses of medicine and water in his feeding tube.
But when they got the call, the laughter turned to quiet, and Kevin and Jada Daves did what they have done so many times before. Phoned someone to care for their other four children and packed clothes for at least a week. Sent out a quick email and a text message, telling family and friends that Shafer was headed back to the hospital, asking them to pray.
The creatinine level in Shafer’s blood was too high, which meant his transplanted kidney wasn’t functioning properly. No one knew exactly what it meant, but it wasn’t good.