At just seven weeks old, Eva Batista was diagnosed with Spinal Muscular Atrophy (SMA), a rare disease which attacks the body’s muscles. Batista, who lives in North York, Toronto with her family, is among one of the youngest known cases to be diagnosed and live with SMA. She is currently fed through a tube because of her difficulty breathing and her arms lay by her side, unmoving because of her weakening muscles.
The deadly neuromuscular disease results in the progressive wasting of muscles and the loss of motor neurons. It currently affects as many as ten thousand to twenty-five thousand children and adults each year and is listed as one of the most common rare diseases. The disease has different forms of severity, and Batista has been diagnosed with Type 1, the most severe form.
There is currently no cure for SMA; however, there are two treatments available to help manage the symptoms. Zolgensma, labelled by some to be a “miracle drug,” is one of the treatments and consists of a one-time injection. However, it costs $2.8 million. Moreover, it has not been approved in Canada so patients are required to travel to the United States where it is available.
While the Batista family struggle to raise the funds, they are also faced with waiting for Health Canada’s approval to travel to Boston to receive the treatment. “I’m [more] fearful the more we wait. We don’t know [what] the end outcome will be. Every day, there are big changes.” Batista’s mother Jessica Sousa told CTV News Toronto.
As the fight to raise the required amount of money continues, the Batista family is racing against the clock. SMA is the leading cause of death among infants, and if left untreated, can kill a baby before the age of two.
A GoFundMe page was created to help fundraise and Sousa hopes that people will do whatever they can to help their little girl.
“Our baby girl Eva is an expressive, smiley, and happy baby who is loved so much by her family and friends. She came into all our lives and brought a shining light with her that follows her everywhere she goes. At two months of age, her life has already made ours so much more full and meaningful and we could not imagine a life without her. Some of her top favourite things are music, having her diaper changed, and of course conversations with Mommy and Daddy. As Eva’s parents, we want her to live a long, happy and healthy life and we are ready to do whatever it takes to ensure she receives the best medical care available,” reads the GoFundMe page.
Batista recently received her second treatment of Spinraza, a drug that was approved in Ontario this past summer. Her father, Ricardo Batista, says that the drug will stabilize his daughter’s condition and extend her life, but it is unknown as to how long. Therefore, they are highly hopeful for the chance to access the potentially life-saving Zolgensma.
“[It] is especially heartbreaking when you think about $2.8 million. What kind of family has that lying around?” Batista told CTV News Toronto.
Batista’s parents are doing all they can to raise the money to save their daughter’s life. They have currently raised $1 million and they highly appreciate those that have donated and organized fundraisers for baby Batista. However, they are still about $2 million short of their goal.
“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,” says Sousa.
“When she was born and throughout the pregnancy, there was nothing detected. [After] she was born, the [doctors] did their physical exam [and] everything was fine. And then slowly we started to notice certain things. When we pick[ed] her up, her arms would fall down [and] she didn’t have strength to keep them up. Even when she would drink milk, it would take her a lot longer,” Batista told Global News in an interview. “We didn’t know it was a sign of anything at that time.”
Batista now continues to struggle. She will likely need a respirator soon in order to breath. “It’s torture to go through this,” says Sousa.