An insurance company denied treatment to newborn twins suffering from fatal genetic disorder, which if remain untreated could claim their lives within two years.
During a routine check-up after birth, the twins – Eli and Easton Reed were diagnosed with spinal muscular atrophy, a genetic disorder affecting nerve cells that control voluntary muscle actions including walking, head movements, and sitting.
Upon learning about the diagnosis, the twins’ mother, Amanda Reed, said, “Time is of the essence with this since they don’t have symptoms as of right now”.
She continued, “It’s best for them to receive this treatment now. because once symptoms start, it’s un-reversible. So, time is of the essence, but we are still trying to explore all of our options”.
For the treatment, the doctors recommended “managing the symptoms and preventing complications” as well as several medications including Zolgensma, an FDA-approved gene therapy worth around $1 million to $2.5 million per child.
Zolgensma, manufactured by Novartis, targets the genetic root cause of the spinal muscular atrophy, causing the disease to slow down.
While applying for insurance to treat their children, the parents came to know the insurance company dropped coverage for Zolgensma medication just one day after the birth of the twins.
The parents have now started a GoFundMe to garner support from community to pay for the twins’ medications.
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