Newborn Twins Diagnosed with Rare Disease Denied Coverage for Treatment
Newborn twins, Eli and Easton Reed, were born on March 31, 2024, and were diagnosed with spinal muscular atrophy (SMA), a rare and deadly genetic disease. SMA refers to a group of hereditary diseases that can damage and kill specialized nerve cells in the brain and spinal cord. In the case of Eli and Easton, the disease affects the motor neurons that control movement in various parts of the body.
Unfortunately, the family’s insurance company denied coverage for the vital treatment needed to save the boys’ lives. Without treatment, children with SMA typically do not live more than two years. However, in a ray of hope, a GoFundMe page was created by Kecia Vant Hof, Amanda’s step-sister, to raise money for the twins’ life-saving treatment. So far, an impressive $359,704 has been raised.
The fundraiser was paused with the hope that the boys will soon receive the necessary medication. The insurance company had initially covered gene therapy, but abruptly stopped, leaving the parents unable to afford the life-saving treatments. Many powerful people in Missouri are now working to ensure that Eli and Easton receive the treatment they urgently need.
The Reed family is going through a challenging time as they fight for the health and well-being of their newborn sons. The community has rallied behind them, showing immense support and generosity in their time of need. With the funds raised through the GoFundMe page and the efforts of those advocating for the twins’ treatment, there is hope that Eli and Easton will receive the care that can potentially save their lives.
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