Decades after rare disease diagnosis, family and physician hail genomic breakthrough
For many years, Tonya and Cody Hanson's parents didn't know what caused their children to have weak facial muscles, cleft palates and curvature of the spine. Nor did they know what produced the phlegm that had to be suctioned from each child's lungs every 15 minutes for the first three years of their lives.
"You do what you have to do," said Janice Hanson, Tonya and Cody's mother. "Each child felt that they were loved by my husband and myself and that love helps the child hold on. Love has everything to do with it."
Doctors initially misdiagnosed the children with Moebius Syndrome, a disease characterized by facial paralysis. "My sister Tonya set such a good example," Cody Hanson said. "She said, 'We don't know what we have, but we're just going to deal with it and do the best we can.' We were always figuring out life for the first time. Everything was new."