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For Wheelchair Users, Sandy Beaches Pose Challenges

Most people love the beach. Whether it’s your first time going to the beach or not, seaside vacations, and traveling in general, are almost always enjoyable. But what if you can’t get to the ocean once you’re there? Disabled individuals must find other ways…

Weighing the Unknowns of Family Planning

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,…

How Newborn Screening Saved My Son’s Life

One of the first tests my son had as a newborn was called a newborn screening test. This simple yet important blood sample is what started our journey with Pompe disease. The disease was added to Pennsylvania’s newborn screening panel one year before Cayden…

The Good and Bad of IEP Meetings

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…

A Look Inside My Son’s Home Infusions

Although enzyme replacement infusions were initially very frightening, they have become a part of our routine. My son, Cayden, requires this lifesaving medication due to his infantile Pompe disease. It works by replacing the enzyme that his body cannot make on its own.  For the first…

The Special Specialists That Help Manage My Son’s Health

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…

Finding Our Pompe Family, Thanks to the Odds

When you hear the word “family,” who do you think of? Most people think of their immediate family and relatives, such as parents, siblings, grandparents, aunts, uncles, and cousins. However, this word means so much more to me. After a rare disease diagnosis, we often…