Newborn twins fight rare disease, family says it’ll cost $4.2 million to save their lives

KANSAS CITY, Mo. (KCTV/Gray News) – New parents in Kansas City are fighting to save the lives of their newborn twins.

They said the boys have a rare genetic disease that will cost the family millions of dollars to treat.

Amanda Reed gave birth to Eli and Easton on Easter. Five days later, after regular tests, doctors found the disease.

“They sat us down and told us that there were some very concerning labs that came back on both of our boys; for Spinal Muscular Atrophy,” Reed said.

SMA is a disease that prevents muscles from growing and impacts movement in the arms, legs, face, chest, throat and tongue, according to the National Institute of Neurological Disorder and Stroke.

Eventually, the twins won’t be able to walk, swallow or breathe on their own.

“Their life expectancy is one to two years without treatment,” Reed said. “It’s just been a nightmare, an absolute nightmare.”

She said the one-dose treatment that would save the boys’ lives is called Zolgensma, a $2.1 million drug. Both boys need it, so double that.

“These infants that receive that IV infusion, Zolgensma, before their symptoms start, like our boys’ symptoms haven’t started yet, studies show they’re living up to normal lives,” Reed said.

It’s a race against the clock, as symptoms could pop up at any moment.

But then the couple was blindsided by another nightmare. Their insurance and where Amanda works, Mosaic Life Care, cut the coverage of the drug just one day after the boys were born.

“Children’s Mercy, because that’s where we would be going for the treatment, tried to ask them if it could be covered since they were born a day before the cut, and they were denied,” Reed said.

After many appeals and proof of success, the company still denied the Reeds.

In a statement, Chief Executive Officer Mike Poore told KCTV5:

“Global pharmaceutical companies are putting profitability over affordability, making it impossible for employers like our hospital system to bear the financial burden of these exorbitant drug prices.

In January 2024, Mosaic’s Health Care Trustees made the gut-wrenching decision not to cover expensive gene therapy used to treat ultra-rare diseases. Covering these treatments could cripple the financial viability of our health system, directly impacting our more than 4,000 employees and the approximately 270,000 people who rely on the health care we provide in small communities across four states.

We are working hard to help find alternative solutions and financial resources to help in this case. Bottom line: Families should not have to focus on the astronomical costs imposed by drug companies, but instead should be able to focus on the care of their children in a medical crisis.”

Now, the family is frantically trying to come up with $4.2 million to save Eli and Easton.

There is a GoFundMe, if you’d like to help the family reach their goal and save their boys.

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