Ty and Jon
Alberta
As a parent, there are few things you monitor more closely than your child’s developmental milestones. Next to their health and happiness, ensuring your kiddos are reaching each new leap and bound is your topmost concern. So, it’s nearly impossible to put into words the sinking feeling you experience upon realizing the ones you love most in the world are getting older without getting any closer to those monumental next steps such as walking, climbing or playing.
When Ty and Jon were both less than two years old, we became acutely aware neither of our boys were aligning with what is considered normal for childhood development. At first, various care providers dismissed our concerns, writing off the boys’ lack of ability as the result of global developmental delays.
We felt helpless. We were relying on these doctors to give our little people the absolute best care to live their happiest and fullest lives. Yet, for years, they basically told us we just had to deal with the situation as presented.
We were not – and would never be – satisfied with that. We had so many questions and kept asking, “Why?” Our boys were joyful and sweet, but their lack of movement and motor skills was alarming. We could not just write that off as something they would have to learn to live with, without any real diagnosis or treatment plan.
Despite all the red tape we faced, we refused to give up.
Eventually, our desperate search for answers led us to an orthopedic surgeon at Alberta Children’s Hospital. Immediately after seeing our eldest son Jon’s movements, the doctor asked if the boys had been tested for Duchenne. We were absolutely stunned by the question and the subsequent diagnosis.
At first, we thought putting a name to the symptoms would be a relief, but the more we learned about Duchenne, the more we realized we were dealing with something very serious and life shortening. It’s been many years since we came to the realization that our boys would forever require 24-hour care, but never once has any of us been bitter about the confines they have to live within.
Just because life for our family isn’t “normal” does not mean it’s not wonderful, fulfilling, and fun.
This summer, we were over-the-moon to celebrate Jon’s graduation from high school – a feat we were not sure either of our boys would ever reach. Proudly wearing his cap and gown, surrounded by loved ones, Jon crossed the stage to much applause. We could not have been prouder.
When we are not making the most of major milestones (a tradition that stems from not knowing how many our sons may have), we do our best to fill their lives with adventure, especially of the outdoor persuasion. With Jon being 19 and Ty having just turned 18, we encourage their independence as much as possible. The boys absolutely love spending time in the mountains, hanging out with their furry comrades and taking in the beauty of nature.
Like any child, ours have always flourished under love, nurturing and care. So, our message about Duchenne is not one of despair. With the support of Defeat Duchenne Canada and the research it funds, our family is consistently looking and moving forward. Every time we hear about a new treatment or study, we are filled with excitement. But, we still desperately need donations to speed up the research process and increase the number of families who benefit.
Our boys are very happy, and we are full of hope – a hope that is greatly enhanced by the research that supporters – like you – make possible.
Sincerely,
Doyle, Jody, Jon and Ty
