Grand Junction (KMGH) — A Colorado mom says her baby girl has a fighting chance against a rare disease thanks to a change of heart by their insurance company.
19-month-old Maisie Forrest was diagnosed with a genetic disease called Spinal Muscular Atrophy. It leads to weakness and a loss of muscle function, slowly taking away the ability to walk, eat and even breathe.
The little girl’s mom made a public appeal for help after finding out their insurance company would not cover a new treatment. She’s been posting updates on a Facebook page called Miracle for Maisie and started a GoFundMe page in hopes of paying for a new drug.
Maisie was being treated with a drug called Spinraza, but the FDA recently approved a new gene therapy called Zolgensma that has been shown to halt the progression of the disease.
“What would you do if it was your baby? This is a baby’s life at stake. Quite literally a matter of life and death. What would you do?” said her mother, Ciji Green.
Zolgensma sounded like a miracle for little Maisie, but there one was a problem: the price. It has been called one of the world’s most expensive drugs with a cost of more than $2 million per patient. In order for the treatment to be effective, it needs to be administered as soon as possible.
“Before the age of two, 95% of them die from breathing complications,” Green said.
On Friday morning, Green received a phone call from the insurance company letting her know the treatment would be covered. She read the letter from Rocky Mountain Health Plans on Facebook and cried tears of joy as she shared the news.
“I can’t describe it, knowing that my baby is going to have a chance,” Green said.