Share icon Share ADVERTISEMENT 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.
Highlights Insurance denied coverage for newborn twins’ vital spinal muscular atrophy treatment after their birth on March 31, 2024.
Without treatment, SMA patients rarely live beyond two years; Zolgensma offers hope.
Newborn twins diagnosed with spinal muscular atrophy face dire prognosis amid insurance denial of lifesaving treatment Share icon 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.
ADVERTISEMENT Share icon 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].
Without treatment, children with SMA don’t usually live more than two years Share icon 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.
ADVERTISEMENT “Again, thank you all so so much.” “Insurance in this country is disgusting,” a reader commented ADVERTISEMENT ADVERTISEMENT Poll Question Thanks!
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Baby sickness is a trigger warning.
After being born on March 31, 2024, twins Eli and Easton Reed were given a diagnosis of spinal muscular atrophy (SMA). Their prognosis is currently dire because their insurance company refused to cover life-saving treatment.
Motor neurons are specialized nerve cells found in the brain and spinal cord that can be damaged or even killed by a group of hereditary diseases known as SMA, according to the National Institute for Neurological Disorders and Stroke (NIH).
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Following their birth on March 31, 2024, insurance refused to pay for the twins’ necessary spinal muscular atrophy treatment.
It is rare for SMA patients to survive longer than two years without treatment; zolgensma provides hope.
Through GoFundMe, $359,704 was raised for Eli and Easton’s life-saving medical care.
Motor neurons regulate skeletal muscle function, including speaking, walking, swallowing, and breathing, as well as movement in the arms, legs, face, chest, throat, and tongue.
The NIH claims that there is no perfect treatment for SMA. Physical therapy and medication, on the other hand, are two forms of treatment that can help control symptoms and avoid complications.
With insurance refusing to pay for life-saving treatment, newborn twins with spinal muscular atrophy have a grave prognosis.
Photograph courtesy of Amanda Reed.
For Easton and Eli, from St. Joseph, Missouri, USA, and the twins’ birth, the family claimed that their insurance company had stopped paying for the medication Zolgensma, which was part of the treatment.
The twins’ mother, Amanda Reed, told KMBC earlier this week that “time is of the essence with this… since they don’t have symptoms as of right now.”.
To check for SMN1 gene mutations or deletions, a blood test is available. According to the NIH, this test can determine whether a person is a carrier as well as identifying at least 95% of SMA Types I, II, and III.
Amanda Reed is credited with the image.
Amanda went on to say that it is best for them to start this treatment right away because once symptoms begin, they cannot be reversed.
Time is of the essence, so we’re still trying to look into every possibility. “.
Austin Reed, the twins’ father, told the Kansas City TV station, “I’m holding my heart in my hands.”.
He went on, “It’s difficult to deal with that right now because their life is in the hands of someone else. Whether they receive this treatment or not, you know, that’s somebody else’s choice. “.
Born in St. Louis on March 31, 2024, are baby boys Eli and Easton. USA: Joseph, Missouri.
Picture attribution: KCTV5 News.
Kids Health reports that children with SMA typically don’t survive for more than two years without treatment. Treatment is beginning to extend the life span of children diagnosed with type I SMA.
Children as young as 6 to 18 months old are first affected by type II. Infants are unable to walk, but they can sit by themselves.
Amanda’s step-sister Kecia Vant Hof set up a GoFundMe page to help raise money for the baby boys. There have been $359,704 raised thus far.
Photograph courtesy of Austin Reed.
Amanda and Austin would not be able to afford the life-saving treatments if their parents’ medical insurance company decided to stop covering gene therapy, which is one of the approved treatments for SMA, as of April 1, 2024, according to Kecia.
According to Kecia, “gene therapy is a one-time infusion that costs anywhere between $1 and $2.5 million per child.”.
Kecia notified the fundraisers on April 27 that evidence had been gathered to challenge the insurance company’s ruling, which was ultimately overturned.
Children with SMA typically don’t live longer than two years if they are not treated.
Picture courtesy of Amanda Reed.
The worried step-sister said, “Amanda and Austin are devastated and are at a loss to figure out how to pay for the treatment their children need.”.
Kecia made the announcement that the fundraiser had been canceled on Tuesday, April 30, saying that she “greatly hopes the boys will be able to receive the medication soon.”. “.
In addition, Kecia posted last night, May 1st: “We had paused the GoFundMe, but people have reached out wanting to continue to donate for the boys and their future medical needs. “.
Picture courtesy of KMBC9.
“We appreciate any support or encouragement as we continue this process. Many influential people in the state of Missouri are working extremely hard to ensure the boys receive the medication they require.
“Once more, I want to thank you all very much. “.
One reader said, “Insurance in this country is disgusting.”.
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