Family desperate for help after newborn twins with rare condition are denied life-altering treatment
By Dennis Evans
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SAINT JOSEPH, Missouri (KMBC) — A family in St. Joseph says they desperately need help after discovering that their newborn twins were diagnosed with a rare condition that their insurance company has denied medical coverage for.
The condition is one that, without proper treatment and medication, means their life expectancy is less than two years.
The condition is called Spinal Muscular Atrophy. It’s a genetic condition that affects nerves and muscles, causing progressive weakness and wasting. The twins, Eli and Easton Reed, were diagnosed with the condition just days after they were born at St. Luke’s Hospital.
Their parents say their company insurance changed terms just one day after the boys were born, removing coverage for the Zolgensma medication needed to treat the rare condition.
The gene therapy is a one-time infusion that costs anywhere between $1 and $2.5 million dollars without insurance coverage.
Even their appeal was denied, leaving the family in search of help.
“Time is of the essence with this. It is very crucial that since they don’t have symptoms as of right now,” the twins’ mother, Amanda Reed, told KMBC on Monday. “It’s best for them to receive this treatment now. because once symptoms start, it’s irreversible. So, time is of the essence, but we are still trying to explore all of our options.“
There is good news from St. Luke’s: after a month in the NICU, The family is heading home. They say they will continue their quest for the life-saving medicine, but in the meantime, they are just happy to get their boys out of the hospital.
The family has started a GoFundMe to help support their efforts to pay for the expensive medication and NICU expenses .
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