Trigger warning: Infant illness
Newborn twins, Eli and Easton Reed, diagnosed with spinal muscular atrophy (SMA) after their birth on March 31, 2024, currently face a dire prognosis after the family’s insurance company denied lifesaving treatment.
According to the National Institute for Neurological Disorders and Stroke (NIH), SMA refers to a group of hereditary diseases that can damage and kill specialized nerve cells in the brain and spinal cord (motor neurons).
Motor neurons control movement in the arms, legs, face, chest, throat, and tongue, as well as skeletal muscle activity, such as speaking, walking, swallowing, and breathing.
There is no complete cure for SMA, the NIH states. However, some treatments, such as medications and physical therapy, can help manage the symptoms and prevent complications.
Newborn twins diagnosed with spinal muscular atrophy face dire prognosis amid insurance denial of lifesaving treatment
Image credits: Amanda Reed
For Eli and Easton, from St. Joseph, Missouri, USA, the treatment included the medication Zolgensma, which the family said their insurance company stopped covering just one day before the twins were born.
“Time is of the essence with this … since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, told KMBC earlier this week.
A blood test is available to look for mutations or deletions of the SMN1 gene. This test identifies at least 95 percent of SMA Types I, II, and III, and it also may reveal if a person is a carrier, the NIH explains.
Image credits: Amanda Reed
Amanda further explained: “It’s best for them to receive this treatment now because once symptoms start, it’s un-reversible [sic].
“So, time is of the essence, but we are still trying to explore all of our options.”
“I’m holding my heart in my hands,” the twins’ father, Austin Reed, told the Kansas City-based TV station.
He added: “The fact that their life is in somebody else’s hands, whether they get this treatment or they don’t, you know, then that’s somebody else’s choice and that’s hard to cope with that right now.”
Baby boys Eli and Easton were born on March 31, 2024, in St. Joseph, Missouri, USA
Image credits: KCTV5 News
Without treatment, children with SMA don’t usually live more than two years, Kids Health says. With treatment, children with type I SMA are starting to live longer.
Type II begins to affect children between 6–18 months old. Children can sit independently but cannot walk.
Kecia Vant Hof, Amanda’s step-sister, created a GoFundMe page to help raise money for the baby boys. So far, $359,704 has been raised.
Image credits: Austin Reed
The parents’ medical insurance chose to stop covering gene therapy, one of the recognized treatments for SMA, as of April 1, 2024, leaving Amanda and Austin incapable of paying for the lifesaving treatments, Kecia wrote.
“The gene therapy is a one-time infusion that costs anywhere between $1 and $2.5 million per child,” Kecia argued.
On April 27, Kecia informed fundraisers that evidence had been collected to appeal the insurance’s decision, which was eventually denied.
Without treatment, children with SMA don’t usually live more than two years
Image credits: Amanda Reed
“Amanda and Austin are devastated and are at a loss to figure out how to pay for the treatment their children need,” the concerned step-sister informed.
On Tuesday (April 30), Kecia announced that the fundraiser had been stopped “with the great hope, the boys will be able to receive the medication soon.”
And last night (May 1), Kecia wrote: “We had paused the GoFundMe but people have continued to reach out wanting to continue to donate for the boys and their medical futures.”
Image credits: KMBC9
“Many powerful people in the state of Missouri are working so hard to make sure the boys get the medication they need and we appreciate any support/encouragement as we continue this process.
“Again, thank you all so so much.”
“Insurance in this country is disgusting,” a reader commented
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