Bleep. Bleep. Fire. Fire. Bleep. Bleep. It was 3 a.m., and my eyes flashed open as I bolted out of bed. The fire alarm was going off. Before I had left the bedroom, my 8-year-old daughter, Mary, was flying up the stairs from her basement bedroom, frantic and in tears.
As a caregiver to my three sons living with Duchenne muscular dystrophy (DMD), I’ve had a few bad days lately. I’ve generally felt worn out and a little sad, and the parties around here have been pity parties. I try to be positive and remain in a place of…
The Duchenne muscular dystrophy community is reaping the benefits of innovations in rare disease diagnosis, research, and care. That’s part of what I learned last week while training to cover rare diseases with the National Press Foundation (NPF). I was selected for the NPF’s Rare Disease…
Warning: This column contains spoilers for the Netflix musical film “tick, tick…BOOM!” In my last column, I wrote about my relationship with the concept of crip time, which addresses how time works differently in the lives of disabled people. Crip time has enabled me to accept who I am…
My family enjoys attending sports events and theater productions. There aren’t many things we like more than a nice meal out followed by a game or a play. However, seating for families with wheelchair users is rarely ideal. I can only speak about my family’s experiences.
I never thought that being diagnosed with a rare muscle condition called Duchenne muscular dystrophy would one day lead me to Budapest, Hungary, but life always surprises me. A few weeks ago, I jumped on a flight to the historic European city to speak at a Duchenne conference.
School and Duchenne muscular dystrophy (DMD) don’t always go hand in hand. But of course, they can — and when they do, it’s beautiful. But even then, I doubt it’s come about without an extraordinary amount of work from the parents, the school district, or both. This school year,…
The days are long, but the years are short. I’ve often heard that sentiment from parents whose children seem to grow up too fast. I’ve had several moments myself over the years of parenting my seven children. I had one of those moments yesterday when my oldest son, Max, who…
Note: This column includes thoughts about suicide. Resources for help are listed at the end of the column. I delivered my first research presentation at the College of Alice & Peter Tan (CAPT) at the National University of Singapore (NUS) on Sept. 17. In March, my favorite lecturer from my…
Duchenne muscular dystrophy (DMD) is a progressive disease, but for me, the mother of three sons with DMD, things have been more nuanced. The grief I experience from being associated with a rare, chronic disease has been anticipatory, erratic, and constantly cyclical. It did not start small and grow…
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