family

I’m Thankful I Can Depend on My Family for Help

When you have a child with a rare disease, it can be difficult to find people who are both comfortable and willing to care for them. It’s been a challenge to find people I trust enough to watch my 4-year-old son, Cayden, who has infantile-onset Pompe disease. Cayden…

Trying to Fit In as a Teenage Rare Disease Parent

I was 16 when I had my son, Cayden, in 2018. Being a teen parent brought its own set of challenges. I had to leave public school and finish high school online. I also lost many friends, because most teenagers like to spend their weekends having fun, not cooped…

Self-care Is Essential for Special Needs Parents

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…

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…