Our lives changed in an instant

Come November 2008 we hadn't made any progress with an explanation of what was happening with our son. What had happened was a continued regression of Evan's physical skills. He was crawling less, and he had a difficult time sitting himself up. Between this, and the move to a new country, with no job, I fell into something that I now know was a pretty deep depression. My dear, sweet, wonderful husband could tell that I was struggling and sent me to Florida for 2 weeks to be with my friends. We decided that while we were there we would try and do as much testing as possible through Evan's former pediatrician. I contacted her before we arrived and she so graciously agreed to help us.

We were there for 2 full weeks and did soo much testing. My friends drove me everywhere and even stayed with me through all kinds of procedures. They served as a second set of ears to ask questions that I hadn't thought of. They even helped me interpret a doctor with a VERY heavy accent. They served as shoulders to cry on and the ears that I needed to vent to. They gave me the hands that I needed to hold.

One of our appointments was with a neurologist. He wrote down a list of 6 diseases, in order of severity, that he thought could be affecting our little guy. The interesting thing is that he made a very strong point to say that the 6th disease (SMA) was the least likely. I called my husband and together we started to do our own research, based on the list, of what might be going on with our son.

The second we read through the "official" tell tales of Spinal Muscular Atrophy we both KNEW that was what it was. Evan had all of the signs of Type 2 SMA, and we had a VERY strong feeling in our hearts that told us that is indeed what he had. My heart sunk!!!! I called his pediatrician in tears and begged that we jump right to the DNA testing for SMA. She tried to assure me that it did no good to jump to conclusions, but I KNEW!! At this point we only had a couple of days left, but she worked her magic and got us in for the testing. We did this blood test the night before we left to come back home to Daddy.

It was Thanksgiving during that trip and I remember talking to my friend, Lacy, about how I was feeling. We were together on Thanksgiving Day and I was watching Evan watch all of the kids literally running around the yard. He looked so sad! I just started to cry on her shoulder because I wanted so badly for Evan to have the same experience that most kids have. I told her that I felt like I could handle anything, I just needed to know what I was handling. BUT I really didn't want to handle this. I WANTED Evan to be able to enjoy movement like other children.

God Bless my friends who were an incredible support while I was going through a literal hell. God Bless the doctors who did so much for our son and eventually led us to a diagnosis, so we could move on with our lives.

Evan and I returned to Canada and painstakingly waited the 2 weeks for the dreaded phone call. I knew in my heart what I was going to hear, but I desperately hoped (harder than I have ever hoped for anything) that I was wrong. I wasn't wrong. On December 6, 2008 I was driving in the car when a phone call from Florida came informing me that my son, Evan, indeed had Spinal Muscular Atrophy Type 2. In an instant our lives changed FOREVER!