Born on August 11, 2019, Eva is an expressive, smiley, and happy baby who loves music, having her diaper changed and of course, conversations with Mommy and Daddy—not very different from any other baby. Eva is beautiful and smart. She brings joy and love to her family and friends. Eva was diagnosed with Spinal Muscular Atrophy (SMA) type one.
When Eva’s parents, Jessica and Ricardo Batista, were given the diagnosis on October 2, their world changed and their focus has become keeping their baby alive.
SMA is a nightmare, it is a disease that robs people of their physical strength by affecting the motor nerve cells in the spinal cord; taking away the ability to walk, eat or breathe. SMAI specifically, is the most severe when diagnosed prior to one year of age.
Spinraza is a treatment available in Canada 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.
There is, however a “miracle drug” which can cure this muscle-destroying disease. Zolgensma was approved last year by the FDA in the United States. It is a one-time infusion for infants, the medication targets defective motor neuron cells and alters them permanently, so they can work properly. This is not a treatment—it’s a cure.
Unfortunately, there are two bumps in the road—time and money. The treatment needs to be administered before she is two years old, which gives Eva a 15 month countdown. Zolgensma also comes with a hefty price tag—a staggering 2.1 million USD. This is a devastating number to have hanging over your child’s head.