Twin boys Eli and Easton Reed were born to Amanda and Austin Reed March 31, 2024. The boys were diagnosed with Spinal Muscular Atrophy Type 1. A treatment is available which would cure them, but Mosaic has denied coverage.

A Tarkio High School graduate and her husband are fighting for care needed to save the lives of their newborn twin sons. Amanda and Austin Reed of St. Joseph, Missouri, welcomed Eli and Easton into the world on March 31, 2024. After they were born, it was discovered through routine blood work that the boys have a very rare genetic disease called Spinal Muscular Atrophy Type 1. This disease shortens life expectancy as it destroys muscles and the atrophy of their muscles would result in the inability to walk, swallow, and breathe on their own.

There is a drug available that the boys need that would stop the progression of the disease, but it is very expensive at over 2.1 million dollars per child. Amanda is a nurse employed through Mosaic Life Care at St. Joseph – Medical Center. Austin and Amanda’s family has medical insurance through Mosaic. Mosaic’s insurance covered the medication the boys needed up until April 1 (the boys were born on March 31). Mosaic’s Healthcare Trustees initially denied their coverage saying they wanted clinical proof that the drug did what it said. Children’s Mercy provided a full packet of evidence and resources, along with submissions of testimonies from other parents’ of children with SMA as proof. The trustees met to review Austin and Amanda’s appeal, but Mosaic chose to deny their appeal. If the boys get the gene therapy medicine before the onset of any symptoms, they should be completely healthy children with no medical issues and have a normal life expectancy. But if they develop any symptoms beore receiving treatment, it will be irreversible. The gene therapy is a one-time, one-hour infusion that would completely change their lives.

As of Monday early afternoon, April 29, a GoFundMe had raised a little over $102,000 for the family, but at $2 million per baby, much more is needed, and quickly, as an infusion of the lifesaving treatment is scheduled for May 17. Visit https://gofund.me/c602152d to donate or Amanda Reed’s Facebook page for more information or ways to donate.