AURORA, Colo. -- A 20-month-old girl from western Colorado received the live-saving treatment she needs thanks in part to a viral online movement.
Maisie Forrest was diagnosed with type 1 spinal muscular atrophy in June 2018. The genetic disorder 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 Ciji Green, Maisie’s mother, during a July interview.
An FDA-approved treatment for children under 2 years old — called Zolgensma — stops the disease from progressing.
It would have cost Maisie’s family $2.125 million out-of-pocket for the one-time, life-saving dose.
“She led an army — Maisie’s Army,” Green said.
Green, alongside thousands of strangers, have been fighting for Maisie's life.
On Wednesday, they managed to beat the odds as Maisie received the first dose of Zolgensma in Colorado since its FDA approval.
The infusion was administered at Children’s Hospital Colorado in Aurora.
“I think it went well,” said Julie Parsons, a professor of clinical pediatrics and neurology and Children’s Hospital. “We’re all excited to celebrate with Maisie and her family.”
“I haven’t felt joy like this. I haven’t been happy like this in over a year,” said Green.
Green admits she had almost lost hope after Medicaid denied her claim for Zolgensma.
“I was starting to accept the fact that Maisie’s not going to get it, but at least she’s going to make it so others can," Green said.
After FOX31's story about Maisie aired in July, the link was forwarded to Bill Pulte, a Twitter philanthropist who uses social media to raise money for people in need.
“The teammates (Twitter followers) made phone calls they posted online. I mean, this thing went viral in a matter of minutes. And that’s what I think the beauty of social media is,” Pulte said Wednesday at Children’s Hospital.
“I read the story and I said, ‘My god, all this beautiful baby needs is a lifesaving drug.’ So I started to think, ‘OK, what are our avenues?' Legal was a big one. We got a lawyer, we got involved, we contacted FOX31 and we made it happen,” Pulte added.
The denial was overturned by Rocky Mountain Health Plans in late July, after Green was granted another hearing, which her newly appointed attorney attended.
“I think [Maisie] was overlooked the first time because there’s not enough information on SMA and so they just have to go based on a piece of paper that they’re given [by a doctor]," Green said.
Green and Pulte met for the first time at Children’s Hospital, shortly after Maisie’s hour-long infusion concluded.
“It was one of the most beautiful things, outside the birth of my child, seeing her. Looking in the baby’s eyes and knowing all the work that everybody put into it made it totally worth it,” said Pulte.
At 20 months, Maisie was just four months shy of being too old to qualify for Zolgensma. Ninety-five percent of children with type 1 spinal muscular atrophy do not live to see their second birthday.
For the first time since her daughter’s diagnosis, Green believes that’s a milestone she’ll get to celebrate with Maisie.
“What are we doing for you second birthday?” she said to Maisie, shortly after the infusion, inside their hospital room. “We have to have a gigantic party. It will probably be at the hospital because that’s where all her friends are,” Green said, laughing.
But this family’s fight isn’t over yet.
“I want to use the traction and following that Maisie has to continue to pay it forward,” Green told FOX31. “I want to give others a voice and fight for babies and help parents that don’t know how to fight.”
She says Maisie’s army is just getting started.
“We’ve helped overturn three denials for three other babies to get approvals for Zolgensma. So we’re just going to continue on that path," Green said.
Parsons is also optimistic state lawmakers will get involved in the near future.
“We’re hoping in the state of Colorado to be able to have newborn screening and to be able to have legislation to get that in place,” she said. “And we’re hoping that may happen by the end of the year.”
Parsons says if that is the case, doctors will be able to identify whether babies have the disease very early, perhaps even before they show symptoms.
Maisie will be monitored on a weekly basis for the next three months.AlertMe