Grand Junction toddler celebrates 2nd birthday after $2 million treatment for rare disease

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Months after Medicaid decided to cover a $2 million treatment for a Grand Junction toddler with a rare disease, the girl has defied odds and celebrated her second birthday.

Ciji Green has never been happier to watch her daughter, Maisie, enter into what she’s already deemed the "Terrible Twos."

“She’s such a brat,” Green said, laughing.  “I’m so excited. I think I’m the only parent who says, ‘Yes, she’s hitting me!  Yay, she’s kicking!'”

Six months ago, Green didn’t think this day would ever come.

“Her breathing has been the biggest thing for us.  I was certain that’s what was going to take my baby.”

Maisie was diagnosed with Type 1 Spinal Muscular Atrophy in 2018.

If the disease goes untreated, 95 percent of children given the diagnosis don't live to see their second birthday.

Last week, Maisie celebrated hers.

“It was just such an emotionally charged day— like it all came out. We’re here. She’s alive. She’s healthy. She’s doing so many wonderful things,” Green said, with tears in her eyes.

“Now there’s hope.  here’s so much hope,” she said.

That’s thanks to a life-saving, one-time dose of a medicine called Zolgensma, which Maisie received back in August.

When Green first spoke to FOX31 in July, Medicaid had denied her coverage for the $2.2 million drug.

Shortly after our story aired, Medicaid reversed its decision.

More than three months later, doctors confirmed what her family has witnessed for months — the 2-year-old is showing significant signs of improvement.

“The fact that she’s able to sit up on her own, turn her head back and forth, lift her arms up, put a little bit of weight on her legs — are all things that we would not have expected a baby to see with spinal muscular atrophy do,” said pediatric neurologist Dr. Julie Parsons, with Children’s Hospital Colorado.

“She can say ‘hi.'  She does ‘knuckles.’  She can wave hi and bye,” Green said.

“Her legs were very limited to movement. And now she’s grabbing her toes and putting them into her mouth,” Green said, laughing.

Maisie still requires a ventilator and suctioning, but Green said she’s less dependent on machines now.

"When she sleeps is the only time she’s requiring her vent, or she’s tired after a long day,” Green said.

Green has wasted no time joining the group that first rallied around Maisie — known as Maisie’s Army — fighting to help other families get Zolgensma for their infants.

“We’ve helped 18 kids get their decisions overturned at get their drug. All the kids that have gotten the drug are doing phenomenal,” Green said.

She’s in the process of starting a non-profit to continue helping children with SMA.

“I begged the world to help me with my baby. Everybody came out of the woodwork to help my child. I owe it to them because: hat would I do for my child? Well, I’d do exactly what I’m going to do for yours.”

And as for Maisie, Green said she’s not sure what to expect moving forward — and that’s a good thing.

“Every day I had that anxiety and that stress of ‘Is today the day?’ With Zolgensma, I don’t know my future and I’m okay with that," Green said. "It’s a great thing: the unknown.”

Read more: Grand Junction girl receives life-saving, $2.1 million treatment for deadly disease

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