This picture was taken after Ella had "scooted" herself away from the leg of the coffee table (behind her) to where she is in the photo. The smile on her face really tells it all...pride, happiness, self-satisfaction, and a will unmatched by many.
As we look to the researchers and their tireless work to find treatments or a cure for SMA we must live day by day with the disease. It works itself into the fabric of our lives; primary target...Ella.
The great work being conducted by so many people have gotten us closer and closer to a viable treatment for SMA. I can remember saying, when Ella was first diagnosed that, "Our job is not to save her; our job is to keep her alive until they find a cure".
Over the past two years we have learned much about the human body, the psyche of the soul, the love of others, and the spirit within. We continue to learn more about how best to care for our daughter. As she grows older the challenges change with her as the disease grows as well, yet as she grows she becomes more aware of herself, of SMA, and of her role in battling against it.
This past week of therapies has allowed us to see a small glimpse of the possible future. A future that allows Ella to experience standing, jumping, and a command of her world in a way that she hasn't yet.
In one part of the video she is in an open "cage". A therapeutic piece of equipment that allows for a plethora of activities (oh to have one of these!). In another part of the video she crumples a piece of newspaper...something so simple for most people yet it provides excellent hand work for Ella.
In all, Ella is challenged during every session...and she is a remarkable as I feel I am "seeing the future"...
