Care is what works for family.
Meet the Werner Family
Lisa and John Werner were devastated when their first baby, a sweet daughter, passed away in her sleep at five-and-a-half weeks old. Lisa was not convinced of the SIDS diagnosis, so when her son, Silas, was born a year later, she’d already signed him up for a study to evaluate his health. He stopped breathing during the study, but doctors were able to save his life. That was seven years ago. He hasn’t breathed on his own since.
Silas’s rare inherited disorder, Spinal Muscular Atrophy with Respiratory Distress (SMARD) means that he needs round-the-clock care. Originally, the Werners’ insurance covered the nursing care needed to keep Silas alive. When that benefit was no longer offered in the majority of private insurance policies, the Werners turned to Medicaid, as have hundreds of families in Pennsylvania who rely on home nursing.
“Silas has never been hospitalized,” Lisa explains. “Private duty nursing is working. It’s how our family survives on a daily basis. And Silas wouldn’t be alive without it. Literally, Medicaid is the lifeblood.”
Cuts to Medicaid and the impact on Silas’ care and her family are what keep Lisa awake at night. “We’re working to find a cure for Silas and other kids like him,” she adds quietly. “Researchers with promising drugs give me hope. We just want to keep Silas healthy until that time. And, of course, we want him to be happy. Our dreams are no different than any other family’s.”