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…
As a mom to three sons with Duchenne muscular dystrophy, Betty Vertin sometimes feels that she needs to meet their needs at the expense of her own. Recognizing when she needs to take some time away for self-care is vital to her perseverance as a caregiver and her mental health as a mom, she says.
Last week, I started a new job as a part-time community partnerships executive with K9Assistance, Singapore’s first assistance dog advocacy organization. Assistance dogs are service dogs trained to help disabled people perform tasks to mitigate their impairments. As a Duchenne muscular dystrophy survivor, I’ve always been intrigued…
There is power in community! I’m thankful that my family is part of a big, beautiful community: the parents, professionals, and, of course, those living with Duchenne muscular dystrophy (DMD). They are, in my opinion, the best! When my three sons — Max, Rowen, and Charlie, ages 16, 13,…
A neuropsychological evaluation greatly affected how we plan to educate our 13-year-old son this school year. As Rowen begins the eighth grade, I am proud of the services he will receive. A neuropsychologist hasn’t always been a part of the care team for our three sons with Duchenne…
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