I feel I would be lying to you if I said I expect a cure in the next years. Yet while he warns against false hope, Muenke is cautiously excited. Already, drugs are helping some children move better. Cutting-edge brain tests are revealing cognitive function. Tools to help children learn and communicate are under development.
Suspect genes are under study.
I want to ask how much more can I do for her. HPE affects an estimated one in 10,000 live births and is believed responsible for thousands more miscarriages. Severe HPE can kill quickly, while some mildly affected children may live largely normal lives. Specialists can help, yet parent after parent tells of doctors who dismissed them. Frustrated by the hunt for care, his family's Don and Linda Carter Foundation recruited specialists and established HPE centers at Krieger, Texas Scottish Rite Hospital for Children in Dallas, Stanford University, Rutgers University, and the Children's Hospital of Philadelphia.