Amanda and Austin Reed's baby boys, Eli and Easton, were born on Easter Sunday but were soon diagnosed with Spinal Muscular Atrophy (SMA), a debilitating condition that requires a costly treatment estimated at $4 million.

Devastated by the news, the Reeds recall the moment when doctors informed them about the concerning test results for SMA in both of their sons. SMA is a genetic disorder that weakens muscles, affecting a child's ability to crawl, walk, and control head movements. In severe cases, it can impact breathing and swallowing.

Fortunately, there is hope in the form of a drug called Zolgensma, known to potentially save the lives of babies with SMA. However, the price tag for each baby's one-dose IV treatment is an astronomical $2.1 million. Amanda Reed explained that early treatment with Zolgensma can allow infants to lead normal lives, as studies have shown that their symptoms do not develop.

The Reed family faced another blow when they discovered that their insurance from Amanda's employer, Mosiac Life Care, no longer covered the life-saving drug required for their newborns. Despite efforts to seek treatment at Children's Mercy hospital despite the insurance termination, their request was denied.

The high costs of pharmaceutical drugs and insurance issues are a daily challenge for hospitals like Children's Mercy. The hospital's CEO, Mike Poore, expressed concern over the prioritization of profitability over affordability by global pharmaceutical companies. He stated that expensive gene therapies for ultra-rare diseases were no longer covered by Mosaic's Health Care Trustees, as it could jeopardize the financial viability of their health system.

In a desperate bid to gather funds, Reed's stepsister set up a GoFundMe campaign to help save Eli and Easton's lives. The campaign has garnered significant attention, with almost seven million people donating and over $260,000 raised towards the Reed family's goal of $4.2 million.

Amidst the financial crisis and race against time, an emergency meeting was held where Amanda works, and an appeal was made to the board of trustees to reconsider covering the gene therapy under their insurance. However, the Reeds were devastated to learn that their appeal was denied, leaving them at a loss for how to afford the life-saving treatments their children desperately need.

As the Reed family continues to grapple with this immense burden, they are reaching out for prayers and any form of assistance to cover the millions of dollars required for the medicine. They remain hopeful that their plea for help will touch the hearts of many who understand the significance of fighting for the lives of these innocent newborns.

The Reed family's story sheds light on the overwhelming costs imposed by pharmaceutical companies, reminding us that the focus should be on the care of children during medical crises, rather than the astronomical financial burdens.