Maisie Forrest is a sweet, happy, loving little girl. Like most other 18-month-olds, she loves baths, is a mama’s girl, and has a bit of an ornery side.
But unlike most 18-month-olds, Maisie was born Type 1 Spinal Muscular Atrophy, a disease that destroys the nerves that control muscles.
Most babies with this diagnosis don’t live past their second birthday, which means Maisie is living on borrowed time.
“Maisie was my rainbow baby. She was such a wanted and loved little girl before she was even born. She helped me heal,” Maisie’s mom, Ciji Green, recalls. “She is so sweet and beautiful. She’s a bit mischievous, she has a cheeky smile when she’s doing naughty things.”
But it’s hard for Maisie to be too mischievous with her limited range of motion. Besides having little to no muscle tone, she also spends every minute of every day hooked up to multiple machines that do the work of feeding and breathing for her.
While many toddler moms are fielding tantrums and trying to convince their kid to have one more bite of broccoli, Ciji acts as 24/7 nurse to her sweet baby girl, doing things like feeding her through a G-tube, suctioning her secretions (because she can’t cough to clear them on their own), and administering breathing treatments.
For the Green family, this has been life since Maisie’s diagnosis last summer: Caring for their precious girl around the clock and soaking in the moments as they tick by.
But at the end of May, the family was gifted a glimmer of hope when a gene replacement drug was approved by the FDA.
A drug with the potential to save Maisie’s life.
The family’s excitement was quickly met with defeat when they were handed the second half of the news. The treatment, called Zolgensma, has officially taken the title of the most expensive drug in the world, coming in at $2.1 million for one treatment.
Let that sink in.
What’s more, since the treatment is such a new option, insurance companies likely won’t have a policy written for the new drug in time for Maisie to receive it.
“Imagine being told ‘We have a treatment that can greatly improve your daughter’s chance at life; something that could potentially save your baby.’ Then being told you’re going to miss out on it for whatever reason. I’m heartbroken,” Ciji said.
Yes, there’s so much that can be debated morally, politically, and logistically here, but this isn’t about that. This is the story of a precious little girl who deserves a chance to live, and the family who loves her.
Placed in a seemingly hopeless situation, Maisie’s parents refuse to give up hope.
“It’s hard. I cry a lot. But I will fight every single day to keep her. No matter how hard. She is so rewarding. She deserves better. She is so worth it,” a determined Ciji told me.
In an effort to share their story, they have started the Facebook page Miracle for Maisie and created a “5 for 5 Challenge” which has raised over $19,000 this week alone—a huge step in the right direction, but still a far cry from where they need to get to save their daughter’s life.
“People don’t hold the ones they love long enough,” Ciji told me at the end of our conversation.
And as the seconds continue to tick by, that’s exactly what the Greens are doing—spending their days loving on their daughter and praying for the goodness in this world to sprinkle some light on their darkness.
Because when you’re waiting on a miracle, sometimes that’s all you can really do.