My 2-year-old son, Alfie, lives with LAMA2-related muscular dystrophy. Obviously, it is hard, stressful, and heartbreaking to raise a child with a disability. I wouldn’t wish this condition upon anyone. From his premature birth to his diagnosis, the experience has been a huge learning curve for us, to say…
Columns
As I noted in previous columns, everyone is different. You are who the other is not. This philosophy also applies to the life experiences that lead to a diagnosis. As a child, I was often referred to as clumsy. While I vehemently denied it in my mind, it…
Last week, I traveled to the headquarters of my employer, Bionews, the publisher of Muscular Dystrophy News Today. The trip took me from Newport Beach, in Southern California, to Pensacola, in the Florida Panhandle. While it was an interesting experience, it wasn’t without its challenges, especially with Duchenne…
Most weeks, I toss around column ideas with my friends and family, asking them for advice on what they think could be important or interesting for me to write about. Last week, my husband said, “Umm, how about the fact that you’re heavily pregnant and Alfie is about…
Welcome back to “Hidden Truths.” This week I wanted to move away from the style of my first and second columns and discuss how one of the most basic emotions relates to muscular dystrophy (MD) and other chronic illnesses. Guilt occurs when a person feels regret or shame in response…
I recently started watching a YouTube channel called Yes Theory, which inspires people to “seek discomfort.” The cast of the video blog often go on trips to remote parts of the world, perform on the street, or push their bodies to the limit, all in the spirit of being…
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…
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…
Recent Posts
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- Roche halts development of satralizumab for DMD bone health
- An essay on choosing hope in life with a progressive, degenerative disease
- I have new criteria for when my sons participate in DMD clinical trials