Cooper's Journey

As most of you would know our little Cooper was diagnosed in June this year with Duchenne Muscular Dystrophy. 

Duchenne

The course of DMD is fairly predictable. Children with the disorder are often late in learning to walk. In toddlers, parents may notice enlarged calf muscles, or
pseudohypertrophy. A preschooler with DMD may seem clumsy and fall often. Soon, he has trouble climbing stairs, getting up from the floor or running.

By school age, the child may walk on his toes or the balls of his feet, with a slightly rolling gait. He has a waddling and unsteady gait and can easily fall over. To try to keep his balance, he sticks his belly out and puts his shoulders back. He also has difficulty raising his arms.

Nearly all children with DMD lose the ability to walk sometime between ages 7 and 12. In the teen years, activities involving the arms, legs or trunk require assistance or mechanical support.

The information in this fact sheet was adapted by MDNSW (01/07) from the MDA USA fact sheet (updated 11/06) with their kind permission.

We have had several appointments at the neuromuscular clinic at Melbourne's Royal Children's Hospital to date.  The medical staff there have been overwhelming supportive in these initial stages.  There is not a lot of treatment for boys with Duchenne.  Steroid therapy seems to be the big decision.  A daily dose of prednisilone to strengthen the muscles that Cooper does have and the prospect of possibly walking for two years longer than without the treatment.  However there are some serious ongoing side effects that need to be monitored.  The general school of thought is once you begin this treatment he is on it for the rest of his life.  And yes with therapy or not children with Duchenne Muscular Dystrophy have a reduced life expectancy, generally to their 20's.

We decided to give Cooper the prednisilone as we believed for our son it was the right decision.  But I must say it was a difficult decision to make and I respect all parents who are caring for their child/ren with Duchenne for whatever descision they make when offered this choice.

In the last month we have seen a dramatic improvement, not only in Cooper's strength and ability but in his personality and self confidence.
He is taking the initiative to try new skills and attempt activities he used to ignore, like riding the scooters at kinder (pictured) and jumping for the first time (video).  He is happier in his own ability and is a brighter child!



We hope that Cooper continues to grow in his self confidence so that he is stronger for whatever the future has ahead for him. 

But as you can see below..our kids for the time being...are happy, just being kids!