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My 5-year-old son, Cayden, has seen a nutritionist his entire life. In his younger years, this was important because Cayden was underweight. Recently, he has gained weight, but the visits are still necessary because he’s tube-fed. Thankfully, Cayden is able to see his nutritionist at the same time as…

For years, it’s been evident that my 5-year-old son, Cayden, has extremely sensitive skin. We first noticed the issue during one of his hospitalizations as a baby. We were at the children’s hospital for his enzyme replacement infusion, and when they removed the dressing from his port…

While growing up in Southern California, I spent nearly every day in the summertime with my friends at the beach. We’d excitedly grab our towels and boogie boards and set out for one of the many beaches within 30 minutes of where we lived. But during all those summers, I…

My 5-year-old son, Cayden, is on track with most children his age when it comes to height and weight. But we struggled with his weight for years. He was labeled “failure to thrive” when he was just 4 weeks old. It took until about the age of 1 for…

Time: It seems like we never have enough of it. It goes by so fast when things are great, but when things aren’t so hot, it seems to drag on. We never have enough time to do all the things we want to do, and then one day, it’s gone.

Today is my son Cayden’s first day of kindergarten — a milestone I’ve been anticipating since he was born. While I’m ready for the break, watching him grow up is bittersweet. Kindergarten feels like such a big step compared with preschool. The transition should be pretty easy because…

A couple months ago, I shared with readers about a new technology I was trying out for physical therapy, a powered exoskeleton suit called HAL — for Hybrid Assistive Limb — designed by the company Cyberdyne. It’s used by the RISE Healthcare Group, of which SoCal Elite…

I’m sure most people in the U.S. have heard of the Americans with Disabilities Act (ADA), a civil rights law that protects people with disabilities from discrimination in all areas of life. It became law in 1990, and its sole purpose is to ensure that people with disabilities are…

When Dwayne Wilson found his career to be too physically demanding with Pompe disease, he had to change trajectories. But now, he says, he finds freedom in a cubicle.

A few weeks ago, my grandparents and I purchased a wagon for my kids. I have a 5-year-old son, Cayden, and a 7-month-old son, Kyree. I’ve wanted a wagon for them for quite some time now, and we were finally able to make it happen. While this may not seem…