Gavin Edwin was welcomed into this world on July 29th, 2009! He was a healthy 9lbs and was a happy, laid back little boy from the start. His older brother Caden was in awe of him, along with the rest of us! Even before Gavin was born we talked about all the things we were excited to do together. Caden was going to teach him how to play baseball and how to do wheelies on his bike. Briten was excited about going on snowmobile and hunting trips with the boys, and me, I was just excited for them to grow up with each other and play in the mud, wrestle around, be mischievous, and just be boys!
The first 6 months with Gavin flew by; he rolled over at 3.5 months old and was sitting unassisted at 5.5 months. Around 7 months old we noticed he didn’t like to bear weight on his legs. He didn’t really jump in his jumper he just kind of bounced. I am not sure I would have questioned it if he was my first but because I had Caden I knew it seemed odd. I asked his pediatrician about it at his next check up, they were not concerned but said we could try some physical therapy to see if that helps. They said he has a bit of low muscle tone but that he should catch up with PT. For the next 5 months I went to many doctors and neurologists with them all saying the same things. He will catch up, it’s just some low muscle tone just continue physical therapy. When he turned 1 year old he still was not crawling. I decided I needed to make an appointment with one of the top pediatric neurologists in MN to finally put my worries to rest. I decided if he said the same thing I needed to finally trust them, after all, they are the doctors.
On September 28th, 2010 our lives changed forever. We were told that our overall healthy 13 month old son was probably not going to live past the age of 2. Hearing the word’s “I’m so sorry” over and over will forever be in our minds. All the dreams we had for our kids and our family seemed to be shattered in a matter of seconds. September 28th is the day our youngest son Gavin, was diagnosed with Spinal Muscular Atrophy. About a week after his diagnosis we decided we needed to pick up the pieces and start a new dream. We were not giving up HOPE.
The Gene Therapy program headed by Dr. Brian K. Kaspar is so promising. We desperately want to see this program advance, which is why we have chosen to make the 200 for SMA commitment. For Gavin, and every other child with SMA. They deserve a cure; SMA is a deadly disease that needs to be stopped.
Gavin’s Gusto is dedicated to raising awareness to SMA and HOPE for Gavin’s future. While we breathe, we hope.
Cassie, Briten, Caden and Gavin