Years ago, when Daniel was almost five, we received the news that he had Duchenne muscular dystrophy. We knew nothing about Duchenne at the time, but now that Daniel has just passed his 20th birthday, we have become reluctant experts, and his sister has become an outspoken advocate for people with disabilities.
At five, Daniel walked funny--so said the other kids. At seven, he bloated up due to the steroids. At eight, he began using a wheelchair--too many near stampedes in the schoolyard hastened his willingness to use the chair.
At school, I became more and more of an advocate. "Make sure the other cars don't park in the few accessible parking spaces". "Please provide a male aide, and don't forget to order the accessible bus for the field trip". "Is that place accessible"? "Is there a better remedy for this disease"? "No" we have to tell strangers, who won't look at Daniel, "there's nothing 'else' wrong with him". "No"! we must answer when people ask, "isn't there a cure"? "Yes", we told Daniel, "you have this awful thing called Duchenne, but it will not hold you back". So, we remember Daniel working as a scorekeeper at basketball games, and his dad trailing behind him with microphone in hand as Daniel interviewed the athletes for the yearbook and the local newspaper. We beamed proudly as Daniel told his own story of disability and despair on the spoken word stage. We cried when we let him go off to college as who could care for him they way we do?
Now, we rejoice when he tells us about the academics and care he is receiving from our flagship state institution and about his group of friends with whom he relates to,laughs with, and shares stories. Once upon a time, care for Daniel revolved around physical therapy, occupational therapy, splints, nightly exercises, and steroids--to give or not to give. Gradually, it has become sleep studies; the cough assist machine; the BiPap; the Trilogy which gives him needed breathes of air; heart meds; and wheel chair repairs when you least expect it -- but, it is, after all, Daniel's vehicle to the world, so new wheels, battery replacements, and hardware adjustments come with the territory.
On the cusp of 21 years old, we worry about Daniel's physical health as no cure is on the horizon. Duchenne was an unwelcome guest in our lives, but we live with it in spite of its' awful specter. We have hopes that other boys won't have to wheel where Daniel's chair has had to go.