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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…

Becoming a Special Needs Mom Influenced My Future Career Choice

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…

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…