Like most mothers, I only saw perfection when my first son was born. That quickly changed when we began to question pediatricians about his physical and cognitive delays.
Don’t worry, they said. Boys develop slower; they all catch up by 3.
However, by that time, Anthony still couldn’t climb stairs, fell often and barely spoke.
Finally, when we were approved for evaluation, we received a devastating diagnosis: Duchenne muscular dystrophy.
Duchenne is a rare, progressive disorder in which muscle cells are in a constant state of destruction.
The doctor estimated Anthony would need a wheelchair between ages 8 and 10, and his heart and lungs would give out between 12 and 20. There was nothing we could do, they said. We should just go home and love Anthony for the time we had.
I refused to follow those directions, even though zero Duchenne therapies existed.
And today, I’m still challenging passive norms.
With eight FDA-approved treatments commercially available and 39 more in the pipeline, families shouldn’t have to........