An Ontario family is hoping to raise enough money so that they can afford a potentially life-saving drug only available in the U.S. for their sick two-month-old daughter.
Eva Batista was diagnosed with Spinal Muscular Atrophy (SMA), which is a rare disease that attacks the body’s muscles, at seven weeks old. The disease can often be fatal by the age of two.
“I didn’t understand, I never heard of SMA before,” said Eva’s mom, Jessica Sousa Batista, while choking back tears.
Jessica said Eva must be fed through a feeding tube.
Spinraza is a drug which is successfully being used to stop the progression of SMA but the patient must take it for life. The family said Eva received her first dose of Spinraza on Oct. 11
“We are beyond grateful that we have this available as just a few years ago, babies with SMA did not have this hope and would likely not live to reach the age of two,” a GoFundMe page created by the family reads.
However, a new drug called Zolgensma is touted as a cure and involves just one dose.
But Zolgensma is currently not available in Canada, but is in the U.S., at a cost of $2.8 million.
“Why, why not have it here? Why are we still the ones not approved for it,” said Batista.
Zolgensma is currently undergoing clinical trials in Ottawa and could be approved within the next few years. However, the Batista family said they can’t wait that long.
The family launched a GoFundMe page in the hopes of raising enough money to cover a dose of Zolgensma for Eva.
At this time, the campaign has raised just under $500 thousand.
“It’s the one thing that gives us hope and what we’re fighting for, for her, “ said Eva’s dad, Ricardo Batista.
“Our baby girl Eva is an expressive, smiley, and happy baby who is loved so much by her family and friends,” the GoFundMe page continued. “She came into all our lives and brought a shining light with her that follows her everywhere she goes.”
Jessica said her hope is for her daughter to have a normal childhood.
“I don’t want to see her struggle like this. I just want her to be a normal child and run around with other children,“ she said.