Welcome to ForEva Strong,
A donation page dedicated for Eva Batista, our daughter, who was born on August 11th 2019 and diagnosed with Spinal Muscular Atrophy (SMA) type one on Wednesday, October 2nd, 2019. SMA is a nightmare, it is a disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat or breathe. SMA Type I specifically is the most severe, diagnosed prior to one year of age. Eva is among the youngest known cases, diagnosed at just 7 weeks old.
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 2 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.
As we live in Canada, we do have a treatment called Spinraza available to us which increases survival motor neuron (SMN) protein production, addressing an underlying cause of SMA. 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 2.
There is, however, a treatment available which goes by the name Zolgensma. It is made up of a new, working copy of a human SMN gene that is placed inside a vector. A vector’s job is to take the new, working SMN gene to the motor neuron cells in the body. When the new gene reaches its destination, it is ready to tell the motor neuron cells to start making SMN protein. Although these are all positive outcomes and would allow our beautiful baby Eva to no longer have the difficult symptoms of SMA making her life easier without difficulty walking, eating or breathing the upsetting downside of it all is that it is FDA approved only in The United States and not in Canada.
This treatment has a large price tag of $2.1 million dollars! USD! That’s right, talk about putting a price tag on your child’s life. It is a devastating amount that any middle class family can never achieve. We are begging our community, family, friends and everyone willing to help donate or simply share our page as every effort and donation makes a difference and will get our daughter Eva that much closer to this life-saving medication we so desperately need. I want to already express my appreciation to everyone who is willing to help our family, we could never gather the proper words to explain the depth of heartache and sadness we are facing. This is something no child or human should ever have to experience.
To help get the word out, please share this Go Fund Me on Facebook, Instagram, and Twitter and get your friends and family to do the same! Myself and my family will forever be grateful for it.