Family races to raise $2.8M to treat two-month-old baby with rare muscular disease
A baby, who suffers from a rare neuromuscular disease, is fed through a tube because she has difficulty breathing, and her arms flop to her sides when she’s lifted because of her weakening muscles.
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 one-time treatment, worth millions of dollars, is not available in Canada.
Her parents, Ricardo Batista and Jessica Sousa, from North York, say they are doing everything they can to raise the $2.8 million needed to take their daughter to the U.S. and pay for Zolgensma, a one-time treatment and the most expensive drug in the world.
“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.”
“It’s torture to go through this.”
Parents 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. (Supplied)
This past spring, the U.S. Food and Drug Administration approved the drug, and families across the world have raised funds to purchase the drug, which must be administered before a child is two years old for it to be effective.
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.
Batista told CTV News Toronto that their baby started her first treatment of a drug called Spinraza, which was just approved in Canada in 2016. He said the drug, which is covered in Ontario for her, will extend her life for an undetermined amount of time by slowing down the progression of the disease, but it is not a one-time treatment or cure.
Sousa said she started a GoFundMe page to raise money for Zolgensma after she noticed her daughter’s health was deteriorating.
Two-month-old Eva Batista is struggling to eat because she has trouble using a baby bottle and breathing at the same time. (Supplied)
She said her daughter had lost weight at one point because she had trouble eating and breathing at the same time. The baby now has to use a nasogastric tube to eat.
The family has raised $244,355 so far.
“We have had a lot of support from the community,” Batista said. “It’s kind of been a light in the darkness seeing … people coming to help us and just help our little girl.”
Novartis, the company behind the drug, made $160 million in sales just three months after the drug was approved by the U.S. Food and Drug Administration, according to its latest financial results.
The multinational company stated, in a news release this week, that the numbers represent a “strong launch” that far exceeded expectations.
Meanwhile, families, across the globe, have been crowdfunding and appealing to their governments for money to help pay for the drug.