There are some days where Duchenne is just a thought that is in the back of my mind. I know it’s there, but I try not to let it affect me too much. We live with Duchenne, we deal with Duchenne, we go about our day like Duchenne doesn't exist. Duchenne is our normal these days. It's been 7 years and Duchenne is just normal for us now.
But then there are days where Duchenne just slaps you in the face, you have a hard time getting out of bed over it, your sweet boy who didn’t ask for this is making heartbreaking statements like “ I don’t want to be like this” or “I want to go back to normal” or “If I had been born on the 28th I wouldn’t have Duchenne”.
The weight that comes behind the word Duchenne is like fifteen elephants standing on your shoulders, but you can't stop moving, you can't stop fighting, and you can't fall down. You have to be strong because you have a boy who relies on you to be strong.
Duchenne affects 1 in 3500 boys, it’s completely fatal and there is no cure. We have corticosteroids to slow down any progression, but even corticosteroids come with it’s own sick beast with side effects coming out of every orifice. However, there are clinical trials and that’s always helpful and promising... until it’s not.
No one warns you that there are criteria you need to meet for these clinical trials, or that a study can shut down because there is “no significant evidence” to suggest that the study is working even though you’ve watched your son make huge strides in a positive direction.
No one tells you that the holy grail of clinical trials-- genetic therapies, has an age limit and that your son has officially “aged out”. They try to comfort you and say “well I’ve heard that they are making a trial with kids that are older” but nothing is promised.
They don’t prepare you to have your heart shattered at every appointment and that you have to piece the shards back together because of that little boy that still needs you and that’s just what you do. You use the heartbreak as fuel to fight for your boy, you use the anger pent up from the “I don’t knows” and “We’re working on a new trial” to motivate the scientists to find a cure, you take a deep breath, brace yourself and say “add one more elephant” because I’m not done fighting and you move forward.
Because tomorrow might not feel as heavy and you’ll feel like you can carry on again and Duchenne goes back to feeling normal again until the next wave hits.