It was a Thursday morning; a general clinic day here at ASELSI. I (Jennifer) was asked if I could see a little boy that was having some difficulties walking. We had a team of therapists from Texas visiting, and just happened to have an opening, so we brought him in. As the family walked through the door, the Physical Therapist working with me said, “He has Muscular Dystrophy.” The parents confirmed it with a report from their doctor.
Daniel’s story isn’t finished, as are many of the stories of the children at ASELSI, but his story is one that may not have a happy ending. You see, Muscular Dystrophy is a progressive disorder. The family is aware of the diagnosis, but not its implications. In two years he will no longer be able to walk. Later the strength in his arms will deteriorate, as has the strength in his legs and trunk. His hands will be the last place he’ll have control of his movement. The muscular wasting will continue until he can no longer eat. Eventually, he will die. (And because it is a genetic disorder, any son that is born to this family has a 50% chance of suffering from the same disorder.)
How do you tell that to a parent? I’ve had to educate patients before, but never explain something to them that they haven’t heard first from a doctor or other medical professional. How do you tell them? How much do you tell? When do you tell them? Will they believe it?
And in the midst of all this, I wonder… God what are you doing? Will Daniel be one of the little ones you heal? How can you be glorified in this situation?