Hear community perspectives on topics ranging from navigating a diagnosis to reflecting on clinical trial experiences.
In the media, people with disabilities often aren’t featured as main characters, if they are included at all, so we wanted to share some kid-friendly shows and movies to help teach kids about acceptance and inclusion. Representation in movies and TV shows is important because it shows people, especially younger kids, that not everyone will look or act the same way and that it is important to be accepting no matter what.
“So, how are they doing?” That is the most frequent question we get asked about our 2 boys (ages 7 and 10) who have been diagnosed with the fatal muscle wasting disease, Duchenne muscular dystrophy. There is no easy or short answer to this question because they are both currently doing well, but yet they aren’t because their bodies are slowly deteriorating. Thankfully Duchenne life hasn’t hit them very hard yet and most of their days are just like other kids, with a few exceptions.
I’m Vivek Gohil, I’m 30, and I live with Duchenne Muscular Dystrophy. My life goal is to leave a mark, make the most of life, and help others along the way. Although it’s daunting, I never worry about the future.…