A Living Miracle The Wenger Family

If Alayna Wenger had been born 30 years ago, before the Clinic began, she probably would not have survived beyond her first birthday. But according to her parents, Lucinda and Lydell Wenger, she is now “a very normal, very active toddler.”

Alayna was born with the genetic change that can cause Spinal Muscular Atrophy Type 1, a genetic disorder that causes muscles to become increasingly weak. Her condition was detected by newborn screening, the blood test given to every baby born in Pennsylvania. The Wengers’ midwife notified them of the results when Alayna was 11 days old; Clinic staff met with them that afternoon. “We learned a lot at that first appointment,” remembers Lucinda, “especially how much they cared.”

A few days later, Alayna received gene replacement therapy at Penn Medicine Lancaster General Hospital, one of the Clinic’s collaborators. An intravenous infusion gave Alayna’s cells a working copy of the faulty gene. According to the Clinic’s Dr. Vincent Carson, Alayna’s physician, “This is one of the most dramatic treatments we can provide. It’s almost miraculous.”

Alayna is also receiving a second drug therapy. “We still don’t know what a normal treatment plan is for her,” says Dr. Carson, “so we’re doing research and clinical care simultaneously. It’s patient-centered research. We make a decision with the family and then study it.” With years of Clinic visits ahead, Lucinda and Lydell like the idea of the new facility off Old Philadelphia Pike. “It’s well thought-out,” notes Lydell, “and it’s ten minutes closer to our house.” In the meantime, the incredible advancements in diagnosis and treatment that the Clinic has helped pioneer will enable Alayna to live and grow almost normally. As Lydell says, “If you didn’t know it, you wouldn’t notice it.”