From left to right, Bryce Madsen, Eric Steingraber and Cali Steingraber
We knew something was terribly wrong.We received the news that Bryce had Spinal Muscular Atrophy (SMA). We had never heard of this disease before, but we learned that it is the #1 genetic killer of children. People with SMA lack a protein that makes the muscle fibers fire and the muscles eventually waste away. If Bryce were to become sick, he may not have the muscle strength to fight off respiratory infections. In addition to this devastating news, we learned that Bryce would never walk or be able to complete many of the normal daily living skills that we take for granted.Bryce has been extremely lucky to have recovered from the common cold as well as two bouts of pneumonia. He received his first wheelchair when he was 2 years old and he relies on us to bathe him, dress him, take him to the bathroom, pick things up for him and turn him in bed at night. He has broken both of his legs twice and he had major spine surgery for scoliosis. Despite all of this, Bryce is a spunky 12 year old that is full of life. He has a passion for all sports and for the outdoors. He plays power hockey and Miracle League baseball. He also enjoys shooting his cross bow at grandpa’s hunting property. Due to his limitations, he has had to watch his brother and dad as they go off and hunt. Bryce so badly wants to be able to walk and do things like everyone else. It breaks his heart to always have to watch others do things.
This opportunity that he has been given through Shot for Hope will truly be a once in a lifetime experience for Bryce. He will be able to hunt like his dad and brother, and he will have his own story to share with others for the rest of his life. It will be an opportunity for Bryce to feel normal, and that is really his biggest dream.
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