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Family hopes to fundraise $2M to treat 19-month-old’s rare, deadly disease

GRAND JUNCTION, Colo. — A Colorado mother is desperately trying to raise enough money to pay for a drug that would save her toddler’s life.

Ciji Green's 19-month-old daughter Maisie Forrest was born with a rare disease that's treatable with a drug that costs over $2 million, so they're asking the community for help.

“She can’t be left alone ever, because in a second, she can choke on her own secretion,” Green said.

Maisie was diagnosed with Type 1 spinal muscular atrophy in June 2018. It’s a genetic disorder that steals the body’s abilities to use muscles, swallow, roll, sit up, and eventually, breathe.

“It just takes one cold to kill them.  We lost Maisie twice.  We’ve had to resuscitate her two times so far in her life,” said Green.

Green regularly has to perform what’s called a cough assist, as well as a “suction,” that removes excess secretion from Maisie’s mouth.

“It’s pretty horrible, gruesome stuff," Green said. "As a parent, it’s nothing that a parent should have to ever do to their kids.”

There’s an FDA-approved treatment for kids under 2 years old -- called Zolgensma -- that not only stops the disease from progressing, but can also reverse the symptoms over time.

“This is my baby, and I want to give her the best chance at life, and I can’t do that," Green said. "I can’t do that, because I don’t have $2.2 million.”

That’s about how much it would cost, out of pocket, for the one-time, life-saving dose.

“There’s not a million kids that have this disease.  There’s like, 250, and so in order to continue to fund their research, they need to charge a high amount,” Green said.

Green said part of her thinks it's expensive due to greed.

“It becomes greed when they’re willing to let children go without, which is what’s happened with Maisie," she said. "State Medicaid won’t cover any of the cost.”

Green said Medicaid denied Maisie because she's responded to the other drug she takes, and they don't have clinical data to support the switch at her age. Spinraza, the drug Maisie is currently on, is another FDA treatment that Green says only slows the progression of the disease.

“She used to not be able to move her arms as well," Green said. "But her breathing continues to decline, and that’s why we want to the gene therapy, because it halts the progression [of the disease].”

Currently, she said Medicaid covers the cost of a Spinraza injection, given every four months at a cost of $125,000.

“I almost feel the insurance company is banking on us losing Maisie before they have to spend that kind of money on her,” said Green, referring to the alternative cost of just under $2.2 million.

She said, at this point, Maisie is on borrowed time.

“In May, I watched five of my friends bury their babies -- all on Spinraza -- all around Maisie’s age," Green said.

Green is making a desperate plea to the community to help her raise the money before it’s too late.

“Please,” she said with tears in her eyes.  “This is my baby, and I would do anything for your baby.  What would you do if it was yours?”

The Grand Junction mother is still holding out hope her baby will live to see her second birthday.

“I could find $2 in the bottom of my purse or in my car," Green said. "If we could get a million people to find those two dollars, we could do this.”

You can donate here. 

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