For Eva Strong – Jessica & Ricardo Batista: Living On A Prayer
The Batistas welcomed their adorable baby girl into the world with open arms, filled with joy. But their lives changed dramatically after a medical diagnosis for their newborn child.
When Baby Eva was born this summer, it was a beautiful moment for Jessica and Ricardo Batista. “Everything went well. She was moving and passed all of the newborn screenings,” says Jessica. But as the weeks went by, they started to notice the baby was moving less, instead of more. The pediatrician recommended neurological testing — and then came the devastating news.
When Eva was only seven weeks old, she was diagnosed with spinal muscular atrophy (SMA), a rare disease that causes muscles to weaken, taking away the ability to walk, eat or breathe. And it can become life-threatening. Eva has SMA Type 1, one of the most severe forms, and is among the youngest known cases. “I had never heard of SMA, and our family has no history,” says Jessica. “When we starting researching, we truly understood what we were dealing with.”
Here’s the thing: the U.S. Food and Drug Administration (FDA) has approved two medications to treat SMA, and only one, Spinraza, is available in Canada. Spinraza, which helps to stop the progression of the disease, is administered through a spinal tap in six doses the first year, then once every four months for the rest of Eva’s life.
“But she’s still very alert and very smiley. And just seeing that helps us push through and keep the fight going — for her”
But imagine this: What if a drug existed to cure this muscle-destroying disease? If ever there were a miracle drug, it would be Zolgensma — a new drug to treat SMA that was approved just this year by the FDA in the United States. Administered as a one-time infusion for infants, the medication targets defective motor neuron cells and alters them permanently, so they can work properly. It’s not a treatment; it’s actually a cure, and the next level in gene therapy. One caveat: time is of the essence, as it has to be administered to the child before they are two years old.
It’s hard to put a price on your child’s head. But the cost is US$1.2 million for the treatment, making it the most expensive medication in the world. That is why the Batistas are concentrating all their efforts on raising funds. “A lot of people, especially family and friends, have been helping and supporting us, donating whatever they can,” says Ricardo. “We’re having events all around the city to try to raise money.” Recently, someone put together a car show that raised $30,000. A gala fundraiser is planned, and now they’ve started a GoFundMe page (ForEva Strong). Thus far, they’ve raised an impressive $570,000.
They’re in a race against time to raise not only the funds for the drug, but also the cost of administering it in the United States. “It’s not just the price of the medication,” explains Ricardo. “We have to have the procedure done in the U.S., so we’re probably looking at close to another million dollars in medical expenses.”
Jessica and Ricardo take it one day at a time. “Eva’s muscles are losing strength, and now she is struggling to breathe,” says Jessica. “But she’s still very alert and very smiley. And just seeing that helps us push through and keep the fight going — for her.”