Before my 2-year-old son, Alfie, was born, I was a primary school teacher. While I still work occasionally on a casual basis, it’s a much smaller part of my life than it once was. One of my favorite things about being a teacher was the constant learning — and…
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What does it mean to live? Different people and places may prompt varied answers to this question. For example, in the United States, a person on artificial life-support is considered to be alive, while other people or cultures may not agree with this definition. So, what does it mean to…
My life has been quite busy lately. Between starting my full-time job at Bionews, helping produce two Call of Duty League YouTube shows, working on other freelance journalism projects, and managing my health, which gets progressively worse because of Duchenne muscular dystrophy, I’ve become a bit overwhelmed. When…
Last June, my 2-year-old son, Alfie, had his first surgery to place a feeding tube. It has now been a year since the percutaneous endoscopic gastrostomy (PEG) tube replaced the nasogastric (NG) tube that previously passed down his nostril and throat. Alfie first had an NG tube for…
I stood behind my father in uncomfortable silence. The summer had come to a close, and another school year was preparing for takeoff. I didn’t want to make eye contact, because it was easier for me to let my dad handle the situation, and all would be well. However, I…
How would you respond if I asked, “Who are you?” While the question may seem simple, it is deceptively complex. A college professor of mine once asked the class this question. As students took turns answering to the best of their ability, the professor offered rebuttals replete with “what ifs.”…
Transitions are a part of life. We go through puberty as teenagers and our bodies change. We move out of our parents’ place to go to college or start a new job. We get older, some of us have kids, and our perspectives change. When…
Last week, I took my 2-year-old son, Alfie, for a walk-through at a local preschool. We are checking out all of the preschools in our area so we can find the best fit for Alfie when he turns 3 and is able to go. I was…
Up, up, down, down, left, right, left, right, B, A, Start. Cheat codes were a vital part of unlocking certain hidden aspects of old-school video games. Entering these sequences in a specific order on the game controller would unlock otherwise unattainable features. I would use the controller button…
On April 1, I started full time at Bionews, the publisher of Muscular Dystrophy News Today, writing feature stories about the rare disease community. Since I first started writing articles in December 2019, my work has ranged from interviews with advocates, CEOs, and…
Recent Posts
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- Companies join forces to speed production of 1-time treatment for FSHD
- One way to process loss is by advocating for lasting change
- European regulators back new DMD gene therapy with key status
- I am watching a child lose his independence for the third time