Family races to raise $2.8M to cure two-month-old baby with rare muscular disease

Two-month-old Eva Batista is struggling with spinal muscular atrophy, a deadly neuromuscular disorder that results in progressive muscle wasting and the loss of motor neurons, and the only possible cure, worth millions of dollars, is not available in Canada.

“I’m fearful the more we wait, we don’t know what the end outcome will be … everyday there are small, not small, big changes,” the mother told CTV News Toronto through tears, while holding her daughter tight. “We are trying everything we can to get this medication to help her.”arents Ricardo Batista and Jessica Sousa say they are trying to raise $2.8 million to buy a drug for their two-month-old baby named Baby Eva Batista, who can be seen in this photo as a newborn.

The disease typically affects one in 10,000 people, and is a leading cause of death among infants. If left untreated, it can kill a baby before they turn two.

Look closely at the lack of docs, meds. It approved and surgery still not available in Canada. And our politicians want to create Pharmacare.

This is wrong. Wrong wrong wrong. That someone would charge this much for a drug is disgusting. Spinraza is another option but also costs hundreds of thousands and is only available in 4 provinces. That is just appalling.

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