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Woman organizes benefit concert to raise $2.1M for toddler with rare disease

Data pix.

PHOENIX -- An Arizona woman is trying to help raise more than $2 million to pay for a treatment that could save a toddler's life.

Tracey Felten is organizing a benefit concert in Phoenix in August to help raise roughly $2.1 million.

Her friend's daughter, Maisie, lives in Colorado and has Type 1 spinal muscular atrophy. The condition involves muscle atrophy and difficulty breathing, and makes it tough for impacted children to live past the age of 2. Maisie turns 2 in December.

"It upsets me very much to know that there's a cure out there to help her, but it's money that's in the way," Felten said.

Maisie's family said a new gene therapy treatment that could stop the disease's progression wasn't approved by their insurance. Zolgensma, a treatment for SMA patients under the age of 2, comes with a price tag of roughly $2.1 million.

Maisie's mother said the treatment would make a significant impact.

"Every day is a struggle, because we're not guaranteed tomorrow with her," said Maisie's mother, Ciji Green.

Green said her daughter is currently on the drug Spinraza, which slows down the disease's progression. Green said Zolgensma could halt the progression, and perhaps, undue some of the symptoms.

"I want to keep [Maisie] as long as I possibly can," said an emotional Green.

Now, the challenge is raising a large amount of money for the treatment.

A GoFundMe page was set up to help, and Felten said she hopes to draw a big crowd at the benefit concert in Phoenix on Aug. 24.

"We're doing everything that we can," Felten said. "At least we'll know in the end, whichever way it goes, that we did everything that we could to save her."

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