GRAND JUNCTION, Colo. (CBS4) — A smile on the face of a baby is always a good thing, but a smile on the face of Maisie signals a miracle for her mother. Ciji Green. CBS Denver has followed baby Maisie’s incredible story for months — from what was an almost-certain death sentence, to the battle with an insurance company that denied coverage for the $2.2 million treatment she needed. Now Maisie is doing even better than expected, and her mother is helping other families facing the same fight.
After CBS4’s reporting, her story went viral — and the fight to get her a new life-saving gene therapy drug became a rallying call for people all over the country.
“Our world has just been a whirlwind,” Green said. “Everybody fought so hard for her. We took on this insurance company and we won. It was just like ‘We did it, everyone did.’”
Maisie suffers from Spinal Muscular Atrophy type 1. It’s a very rare genetic disease that causes the muscles to quickly atrophy. Eventually, children with SMA can no longer breathe. Ninety-five percent of children with the disease don’t live past the age of 2.
And the race against the clock was on. In May, the FDA approved a gene replacement therapy called Zolgensma that has been proven to halt the progression and even reverse symptoms in children. The cost: $2.2 million. It is only available to children under the age of 2.
Strangers around the country helped pressure the family’s insurance company to reverse their decision and foot the bill for the drug.
“She got dosed Aug. 7,” Green explained.
The drug promised to halt the progress but Green says it’s working better than anyone, including doctors, could have imagined.
“She got her smile back, she sat up within 48 hours of the treatment,” Green says as tears fill her eyes.
“She laughs now, it’s not the loudest laugh but today at physical therapy she yawned — we don’t see Maisie yawn, we had never seen her yawn,” Green said. “We weren’t expecting those things. Everything we are seeing is a miracle to us.”
Maisie’s Army, as they are called, remain at her side — strangers across the country showing love and support and now turning their power to helping other babies with this rare genetic disease.
Along the way, Maisie has become a celebrity of sorts in Grand Junction.
“I’ve sat there and cried with people. They are so overwhelmingly happy for us they just start crying when they actually see her,” Green said.
Life isn’t normal, it won’t be for Maisie. But at least Green now has hope her baby will get to grow up, to keep fighting.
“She still requires treatment, she still requires breathing, she still requires all these machines. It’s a good problem, it’s a good problem to have, it is a little harder because she’s acquiring more cause she’s doing more but I’m happy to have that problem.”
Using Maisie’s story and the awareness it raised, Green is helping other parents across the country in similar situations.
“Kids are getting denied across the country left and right,” Green added.
Since Maisie was treated, the Green family and Maisie’s Army has helped overturn 16 other insurance denials for the expensive drug around the country.
“Sixteen kids have been able to get approval for this drug to give them the best chance at life,” Green said.
She’s even taking their story and their fight with the insurance company to the Nation’s Capitol.
“We went and talked to congressional leaders about insurance companies… and what it does to a family and what it does to these kids,” Green said. “It shouldn’t take a mother pleading and begging for her daughters life, it shouldn’t.”
But it’s a fight worth she says is worth every painful step.
You can follow Maisie’s progress here: facebook.com/miracleformaisie/