2020 so far is the toughest time to deal with as this year has not been favorable for children with Duchenne Muscular Dystrophy (DMD) like Marcus. On top of his existing mobility challenges, events this year worsened the health risks and restrictions on where he can go.
Marcus has DMD which is a progressive condition common to young boys his age. This genetic condition impacts their muscles thus affecting movement. To make matters worse, internal organs too decline in functions over time. In Marcus’ case, besides being unable to walk and limited hands mobility, symptoms we have observed are stuttering and abnormal bowel movement. Breathing and heart functions could degenerate sooner or later.
Our first scare this year was the Taal volcano eruption. Living just past the 15-kilometer danger zone, our fear back then was what if the ashfall linger for a longer time and consequently affecting air quality. Thank God, we survived that, Marcus got to see the world outside our home after few weeks of waiting for the thick ashes to get washed away. We had trips to the malls a couple of times after the roads were cleared of volcanic dusts.
But just when we thought life is starting to go back to normal, we soon realized in March the mask is here to stay. This time indefinitely and more worrisome. No thanks to COVID-19.
This time the pandemic locked Marcus in at home. Since the quarantine period started, he has not been wheeled out of the house and the windows have been his only view of what’s happening outside. He has missed his therapy sessions at the hospital and he has never returned to the malls again. I went to a Toys ‘R Us to buy an XBox controller without him.
Amidst all this, the transfers from his room to the living room and back, we are grateful that Marcus remains healthy. Knock on wood, he was never sick. He’s relatively active, still sharp in what he does best–video games. His weekends at the malls have also been replaced by karaoke nights in his room. He likes Taylor Swift’s songs, Twenty One Pilots, and lately, BTS. I’m not complaining. I always look forward to dancing while he sings. Good cardio in the middle of the night, in my dreams…Oopps.
Today, September 7, we celebrate another Duchenne Muscular Dystrophy Awareness Day with the hope science will find a cure to this condition soon. Wishful thinking, sooner than COVID-19.
Mood: 2/10 Honks! (Big Bang Theory on Netflix.(