Newborn twins with a rare but often fatal genetic disorder are being denied life-saving treatment by their family’s insurance company.
Shortly after welcoming Eli and Easton Reed on March 31, 2024, the family says: KMBC The twin boys were diagnosed with spinal muscular atrophy.
This genetic disease can “damage and destroy specialized nerve cells in the brain and spinal cord.” National Institute of Neurological Disorders and Stroke explains.
There is no cure, but treatment includes “symptom management and prevention of complications.”
And the twins’ treatment in St. Joseph, Mississippi, included the drug Zolgensma, but the family says their insurance company cut off coverage for the drug just the day before the twins were born.
“Time is of the essence when it comes to this, because there are no symptoms at this time,” said Amanda Reed, the twins’ mother. KMBC.
“It’s in their best interest to get this treatment now, because once they develop symptoms, there’s no going back. So time is of the essence, but we’re exploring all options. That’s where I’m at.
Out-of-pocket drug costs “are between $1 million and $2.5 million per child, a daunting amount of money that we strive to secure through insurance claims and your continued support.” ” said Mr. A. gofundme Explain that it was set up to help them pay for their medicine.
Sorgeshunma The website says it is a one-time treatment that “targets the genetic root cause of spinal muscular atrophy.”
KMBC9/Youtube
as gofundme The family’s insurance company shared, “We have convened an emergency meeting to review all information to determine whether insurance will cover the gene therapy needed for the boys.”
But on April 26, the board denied their appeal, leaving the family to pay for the life-saving treatment themselves, according to GoFundMe.
“I’m holding my heart in my hands,” said the twins’ father, Austin Reed. KMBC.
“The fact that their lives are in someone else’s hands, whether they receive this treatment or not, it’s someone else’s choice, and that’s a difficult thing to deal with right now.”
Without treatment, the twins’ future is dire.
“Patients who are less than six months old at the time of onset are unable to sit alone and are likely to die from respiratory failure before the age of two.” National Library of Medicine Say.
and, cleveland clinic Infants with type 1 SMA, meaning symptoms appear within the first six months of life, “usually die before their second birthday,” the researchers said.
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