DMD and COVID-19

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 His weekends at the malls have also been replaced by karaoke nights in his room.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.

Marcus testing the reclining chair.

***

Mood: 2/10 Honks! (Big Bang Theory on Netflix.(

To the Marcuses Around the Globe

Three years ago we celebrated our first Duchenne Awareness Day. Marcus was with his 1st grader classmates when they let go of the symbolic red balloons in unity with the rest of the world who continue to raise awareness that such type of muscular dystrophy exists. He can still walk back then.

He demands pizza for Duchenne Awareness Day.

Duchenne Muscular Dystrophy is a condition that affects mostly young boys. Also known as just Duchenne or DMD, this condition is progressive with symptoms that may manifest during the early stages of childhood with some kids starting to feel the signs earlier than the others. In Marcus’ case, his condition started to become obvious about a year since he started to stand up. He walks weird, can’t run like other kids, and had difficulty holding himself up on the monkey bars just to name a few. Eventually we discovered he has DMD after we had him checked at the age of seven. At eight he started using his red wheelchair.

DMD poses a whole lot of challenges on parents. The need for commitment, love, compassion, and patience cannot be stressed more than enough. To be honest, it is physically and mentally straining but once you put yourself in the shoes of the child who has it, then everything else that you secretly complain about becomes petty or trivial. As I always remind myself, if I’m frustrated and tired, more so Marcus. This short thought keeps me back up on track.

Today, September 7, we once again join all the families and the other Marcuses around the globe who continue to deal with Duchenne Muscular Dystrophy. We also wish good luck and more power to the people whose aim is to find a cure that could be available soon to everyone who has DMD. It may not happen in our lifetime but as long as the awareness is alive there is always hope. We also recognize the physical therapists (FYI, tomorrow is World Physical Therapy Day) who work hard so that our young boys’ lives are a little bit better each day.

Today’s PT session.

***

This week wifey had me watch Fundamentals of Caring on Netflix but we barely made it halfway as I got so sleepy after coming out of night shift. Despite the short clip I could already feel that this film’s depiction is accurate. Hope that we finish it this weekend and I hope I don’t shed a tear. Shhh.

***