GRAND JUNCTION, Colo. (CBS4)– The clock is ticking for a Western Slope family to fundraise $2.2 million for a newly approved medical treatment for their daughter. Maisie is suffering from an extremely rare genetic disease. Her insurance has denied coverage for the treatment.
Maisie is not your average 19-month-old. She can’t say mama, she can’t speak, but she can sign a few words. She can’t swallow and instead has a feeding tube that allows her to get nutrition.
“This is our reality, and I’m okay with that, I just want to give her the best life possible. We want to give her the best chance we can,” said Maisie’s mother Ciji Green.
Green talked to CBS4’s Matt Kroschel on Thursday from the family’s living room turned ICU in a Grand Junction neighborhood.
Maisie was diagnosed at 6 months with 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.
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. Maisie’s insurance has denied her coverage of Zolgensma, so now the family is fighting to get her the treatment.
They are organizing fundraiser concerts, auctions, online pop up shops, and crowdfunding efforts.
“We are doing whatever we can to get the word out, what would you do, you would fight with everything you have for your daughter,” Green said as she wiped away tears in her eyes.
You can follow this family on social media using the hashtag: #MiracleForMaisie