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Help pouring in for twins denied life-changing medical treatment by insurance company

By Dennis Evans

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    SAINT JOSEPH, Missouri (KMBC) — It’s been only a few days since twins Eli and Easton Reed graduated from the NICU at St. Luke’s Hospital in Kansas City and headed home to St. Joseph.

But since then, the story of their fight to treat a rare condition they’ve been diagnosed with, Spinal Muscular Atrophy, has gone national.

Their journey has been touching hearts all around the country.

The family’s insurance company denied the amount the infants need to pay for life-altering gene therapy that could drastically improve their quality of life and extend their life expectancy.

Without treatment, life expectancy from SMA is less than two years. Without coverage, the treatment costs millions.

For the Reed family, the experience has still been harrowing.

“I’m holding my heart in my hands and just the fact that their life is in somebody else’s hands,” The boys’ mother, Amanda Reed, told KMBC on Monday. “Whether it be that they get this treatment or they don’t, you know, and that’s somebody else’s choice. And it’s just hard to cope with that right now.”

On Thursday, KMBC reconnected with the family and talked with the boys’ aunt, Kecia Vant Hof, about the overwhelming support they have received.

“I feel like you, a lot of people, you know, talk so negatively about the world these days and humanity itself.” Vant Hof said. “It’s just a completely different outlook on people reaching out, and donating, and wanting to help — even when they have nothing to really help with.”

The help has come in many forms, including a GoFundMe Vant Hof created for the twins that has exceeded all expectations.

“We got to $20,000 and in less than a day,” Vant Hof said. “So, then I kind of upped it and I just kept upping it. And then, I was like, you know, I’m just going to let people see how much it actually costs. And see, I was like, there’s no way we’re going to get $4 million.”

They have yet to reach the $4 million goal. However, their campaign for help has nearly garnered a remarkable $400,000.

“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.“

Still, the family says they feel that with the help they are receiving, there is plenty of reason for hope.

“I think just the unknown is really hard for everyone in the family, just not knowing if they’re going to get treatment — if they’re going to start developing symptoms soon. Yeah, I would just say just kind of the fear of the unknown. But also, I’ve seen my family be very hopeful,” Vant Hof said.

Their parents say their company insurance changed terms just one day after the boys were born, removing coverage for the Zolgensma medication that treats the rare condition.

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