The beginning was hard!

How do I begin??

10 months ago our son, Evan, was diagnosed with Spinal Muscular Atrophy type 2, but our story begins long before that.

As a baby Evan was always did what he was "supposed" to do when he was "supposed" to be doing it. He held up his head fairly early. He rolled over early. We didn't notice anything out of the ordinary until June 2008. Our family had a HUGE move coming up and at 11 months old Evan stopped bearing weight on his legs completely. We took him to his pediatrician and began some Physical Therapy thinking it was probably just stress from the house full of boxes. We were only able to get in a couple of sessions before we made our big move to Canada!

Once we were in Canada things only got worse for our angel. With the socialized health care it was next to impossible to find a doctor and we weren't getting anywhere with the walk-in clinics. We eventually got referred to an Early Intervention Program and all they ever told me was that there was "nothing wrong", Evan was just "a lazy kid", "don't stress out mom, you'll only make it worse!" BUT deep down I knew it was something more ... I KNEW it was something MUCH MORE. Truth be told this was a very dark time in my life. I was not adjusting well to the new move, and I was sooo concerned, worried, and scared for my child. There just aren't words to explain that feeling of being lost. I knew my child needed help and I didn't know how to help him.

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Every time we go to the seating clinic, or have an orthotics appointment at the hospital we actually pass the office of the woman we worked with during that time. She stopped us in the hallway one time and tried to place where she knew me from. I have to admit that sometimes I am still a little bitter about their complete lack of help. Here they are trained to spot the rarities, trained to have a keen eye (and Evan had all the signs) and they still missed it. In fact, they had me do things to him (therapy) that for an SMA child are TORTURE!!! I still tear up when I think about it, now knowing what I know.