Insurance Denies Newborn Twins Life-Saving Treatment for Fatal Genetic Disorder: ‘Hard to Cope’

The genetic disorder can “damage and kill specialized nerve cells in the brain and spinal cord,” the National Institute for Neurological Disorders and Stroke explains.

While there is no cure, treatment includes “managing the symptoms and preventing complications.”

And for the St. Joseph, Missouri, twins, treatment included the medication Zolgensma — which the family says their insurance company stopped covering just one day before the twins were born.

“Time is of the essence with this … since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, told KMBC.

“It’s best for them to receive this treatment now. because once symptoms start, it’s un-reversible. So, time is of the essence, but we are still trying to explore all of our options.“