A genetic disorder threatens the lives of newborn twins, but their insurance company denies treatment. The family is now fighting against time and high costs.

Health insurance refuses to cover vital treatment for newborn twins. Without treatment for the rare genetic disease, the future of the two babies from the US is uncertain, reports People. Due to financial hardship, the family from Missouri has now asked for help with a crowdfunding page.

Shortly after Eli and Easton Reed were born on March 31, 2024, doctors diagnosed both babies with Spinal Muscular Atrophy (SMA). The rare genetic disorder can damage and kill specific nerve cells in the brain and spinal cord, according to the National Institute for Neurological Disorders and Stroke.

The disease is not curable, but symptoms and complications can be prevented and treated through therapy, it goes on to say.

The treatment for the twin boys from Missouri includes the drug “Zolgensma”. However, according to People, health insurance stopped covering the drug in its benefits – just one day before the twins were born.

“Time is of the utmost importance as they are not showing any symptoms at this time,” the twins’ mother, Amanda Reed, told “ KMBC .” “It is best if they receive this treatment now. Because once the symptoms start, it is no longer reversible. Time is of the essence, but we are still trying to explore all of our options.”

In an emergency meeting, the insurance company reviewed all the information to decide whether to cover the boys’ gene therapy. As People reports, the parents’ appeal was rejected on April 26, meaning the family now has to raise the money for the life-saving therapy themselves.

The cost of the necessary medication is “between $1 million and $2.5 million per child,” according to the “GoFundMe” appeal that the family launched for financial support. The Zolgesnma treatment is a one-time therapy that treats the genetic roots of spinal muscular atrophy and stops the disease from progressing, the family reports on GoFundMe.

Without treatment, the twins’ future is uncertain. “I hold my heart in my hands,” the twins’ father, Austin Reed, told KMBC. “The fact that their lives are in someone else’s hands, whether they receive this treatment or not, is difficult for us to bear.”

The National Library of Medicine states that “Patients who develop the disease before the age of six months will never sit independently and will likely die of respiratory failure before the age of two.”

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