parenting

All milestones that children reach are important. However, when my son, Cayden, reaches a milestone, it excites me in ways I can’t even explain. When Cayden was diagnosed with infantile-onset Pompe disease at the age of 1 month, I had no clue what to expect. It didn’t help…

On Feb. 27, 2018 at 5 a.m., my son, Cayden, entered the world. I had a fairly normal pregnancy, so nothing could prepare me for the events that occurred once he was born. While some of it is a blur, I can still remember the chaos in the room at…

As special needs caregivers, we have many responsibilities. From the moment we open our eyes in the morning until the time our heads hit the pillow at night, our primary focus is caring for our child and their needs. While there’s nothing wrong with that, it can be…

One of the hardest things about being a special needs parent is all of the unknowns. Not knowing what tomorrow will look like makes planning things a bit difficult. I am someone who likes to have plans set in stone. However, I’ve had to adjust,…

At least once a year, parents of disabled children sit down with teachers, therapists, and other important people at an individualized education plan (IEP) meeting. While IEP meetings are meant to be genuinely helpful, they can take a toll on special needs parents.  During the…

At the young age of 15, I stared at the two bold lines on my pregnancy test and immediately burst into tears. How would I do this alone? I was only a sophomore in high school. I had no clue how I’d finish school and take care of…

Some doctors specialize in one field of medicine, which requires them to go through even more education and training. My son, Cayden, sees many different specialists, including a metabolism specialist, pulmonologist, cardiologist, gastroenterologist, nutritionist, otolaryngologist (ENT), and orthopedist.  Each of these specialists serves a…

Fertility in women is not affected by late-onset Pompe disease (LOPD), but pregnancy may initiate or worsen symptoms, a small study found.  The study, “Pregnancy Outcomes in Late Onset Pompe Disease,” was published in the journal…

Receiving a Pompe disease diagnosis for you or your child can come as quite a shock. But now that you know, you may want to start planning for the future. Types of Pompe disease There are three main types of Pompe disease, each with different ages of onset…

If you are at risk of transmitting Pompe disease to your children, you may be thinking about your reproductive options and interested in prenatal diagnostic testing. What is prenatal diagnosis? Prenatal diagnosis involves performing a genetic test on your baby before birth. Getting genetic material from…