My son is finally riding to school in a wheelchair-accessible van
This school year is the first for my 5-year-old son, Cayden. He attended preschool when he was younger, but now he’s in kindergarten at a public school, where things work a little…
My 6-year-old son, Cayden, has been using a feeding tube since he was a newborn. Although I feared the tube at first, I’ve learned to be thankful for its benefits. Cayden required a…
Read moreThis school year is the first for my 5-year-old son, Cayden. He attended preschool when he was younger, but now he’s in kindergarten at a public school, where things work a little…
My 5-year-old son, Cayden, has been seeing an otolaryngologist, an ear, nose, and throat (ENT) specialist, for years. The first visit was suggested by his metabolic doctors, the ones who manage his…
It’s been a little more than 18 months since my 5-year-old son, Cayden, made the switch to Nexviazyme (avalglucosidase alfa) infusions as the main treatment for his infantile-onset Pompe…
When you become a parent, one of the first things you must learn is patience. Sometimes you’re in a rush to get things done, and then — boom! — the baby is crying or…
In our school district, the first two days of the holiday break were reserved for parent-teacher conferences. I quickly scheduled a meeting with my 5-year-old son Cayden’s kindergarten teacher. Because this year is his…
Not everybody is a morning person, myself included. Nonetheless, the whole idea of sleeping in went out the window years ago when I had my son Cayden, who’s now age 5. Cayden is a…
Because of his infantile-onset Pompe disease, my 5-year-old son, Cayden, has always relied on a feeding tube for nutrition. For the first six months of his life, he used a nasogastric, or…
Last week, my 5-year-old son, Cayden, had a checkup with his cardiologist, the specialist who monitors his heart. Cayden has been seeing a cardiologist since he was just 1 month old. Back then,…
This year, Thanksgiving felt quite special. For starters, it was the first time I celebrated with both of my kids. My youngest, Kyree, turns 1 three days after Christmas, and so far, his first…
Over the summer, I lost someone very dear to my heart. My grandfather passed away on July 18 at 75 years old. It took me quite some time to come to terms with his…
Oftentimes, parents of children with rare diseases don’t have time to focus on themselves. We have so much on our plates because of everything that our children go through. This causes us to…
When I found out that I was pregnant again, I was ecstatic for my 5-year-old son, Cayden, to become a big brother. However, Cayden has infantile-onset Pompe disease, and I’d be lying…
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