Aaron Harney helps his 27 month old son Nathan work on holding up his head at their home in Downingtown, PA. Nathan has Tay Sachs, a disease ordinarily associated with Ashkenazic Jews. Parents of Irish ancestry have a 1 in 50 chance of conceiving a child with the disease. Nathan requires near constant care as his condition has deteriorated over the past year. "We've never gotten out of the infant phase," Aaron says. Nathan now needs 24 hour care as he's unable to turn himself over or move on his own and must be turned every two hours at night. Nathan's muscles stiffen and his joints and limbs become tight so they help him stretch to stay more comfortable.
Scott Lewis For The Wall Street Journal