Eva Batista
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Eva is our first and only child, she was born on August 11th 2019 (before newborn screenings in Ontario).
She was born healthy at 7lbs 11oz and brought an immeasurable amount of joy. Things quickly took at turn after 2 weeks when she completely lost all movement.
At first we were not concerned that she was feeding or sleeping all day because at the end of the day she was a newborn, but we did suspect something was wrong when she was just 2 weeks old and would not move during a diaper change or stretch her little arms and legs in the early mornings. At 3 weeks, we did bloodwork and waited what felt like an eternity for results but then received confirmation that she was diagnosed with Spinal Muscular Atrophy Type 1 (SMA) at just 7 weeks old.
Fortunately, she had access to treatment and was treated with Spinraza shortly after diagnosis. Intrathecal, every 4 months for the rest of her life weighed heavy on us so we decided to put our life out to the public and fight for a new treatment Zolgensma that was only FDA approved in the United States. With the support of an amazing community, Eva received the one time Gene therapy that would stop the progression of SMA, Zolgensma at 15months.
She has certainly faced challenges and had many battles, and has overcome more than any child should. She is a representation of what true strength and resilience is.
Today, she is a happy little girl who has graduated from a life of only knowing therapy and hospital appointments and has had the privilege of starting Junior Kindergarten this September 2023.
Eva is 4 going on 14 these days, super sassy and super sweet all at the same time. She is very affectionate and loves to play doctor and take care of people. Her favourite things to do are arts and crafts, play with her friends, make friendship bracelets, listen to music and definitely bust a move.
Everyday with Eva is a gift. With each passing day she teaches us to treasure life and to celebrate each milestone no matter how big or small and although we often feel grief, there is always room for gratitude and a smile.
She was born healthy at 7lbs 11oz and brought an immeasurable amount of joy. Things quickly took at turn after 2 weeks when she completely lost all movement.
At first we were not concerned that she was feeding or sleeping all day because at the end of the day she was a newborn, but we did suspect something was wrong when she was just 2 weeks old and would not move during a diaper change or stretch her little arms and legs in the early mornings. At 3 weeks, we did bloodwork and waited what felt like an eternity for results but then received confirmation that she was diagnosed with Spinal Muscular Atrophy Type 1 (SMA) at just 7 weeks old.
Fortunately, she had access to treatment and was treated with Spinraza shortly after diagnosis. Intrathecal, every 4 months for the rest of her life weighed heavy on us so we decided to put our life out to the public and fight for a new treatment Zolgensma that was only FDA approved in the United States. With the support of an amazing community, Eva received the one time Gene therapy that would stop the progression of SMA, Zolgensma at 15months.
She has certainly faced challenges and had many battles, and has overcome more than any child should. She is a representation of what true strength and resilience is.
Today, she is a happy little girl who has graduated from a life of only knowing therapy and hospital appointments and has had the privilege of starting Junior Kindergarten this September 2023.
Eva is 4 going on 14 these days, super sassy and super sweet all at the same time. She is very affectionate and loves to play doctor and take care of people. Her favourite things to do are arts and crafts, play with her friends, make friendship bracelets, listen to music and definitely bust a move.
Everyday with Eva is a gift. With each passing day she teaches us to treasure life and to celebrate each milestone no matter how big or small and although we often feel grief, there is always room for gratitude and a smile.