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LARGE JUNCTION (KMGH) – A Colorado mom says her granddaughter has a chance to fight a rare disease with her heart's change of heart.
Maisie Forrest, 19 months old, was diagnosed with a genetic disorder called spinal muscular atrophy. It leads to weakness and loss of muscle function, resulting in a gradual loss of ability to walk, eat and even breathe.
The girl's mother made a public call for help after discovering that her insurance company would not cover a new treatment. She posts updates on a Facebook page called Miracle for Maisie and has created a GoFundMe page hoping to pay for a new drug.
Maisie was under treatment with a drug called Spinraza, but the FDA recently approved a new gene therapy called Zolgensma, which has been proven to stop the progression of the disease.
"What would you do if it was your baby? It's the life of a baby at play. Literally, a question of life and death. What would you do?" said his mother, Ciji Green.
Zolgensma looked like a miracle for little Maisie, but there was a problem: the price. It has been described as the most expensive drug in the world with a cost of more than $ 2 million per patient. For the treatment to be effective, it must be administered as soon as possible.
"Before the age of two, 95% of them die from respiratory complications," Green said.
On Friday morning, Green received a call from the insurance company informing him that the treatment would be covered. She read the letter from Rocky Mountain Health Plans on Facebook and cried tears of work while she shared the news.
"I can not describe it, knowing that my baby is going to have a chance," Green said.
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