The Challenges of Working While Being a Rare Disease Parent

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by Keara Engle |

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When I became pregnant with my son, Cayden, at the young age of 15, I knew I had to start working as soon as possible. So, the week before I turned 16, I began my job hunt. Getting hired as a teen can be a challenge in itself, and being over halfway through my pregnancy made it even harder.

I mostly applied to fast-food restaurants. Thankfully, I got hired at a sub shop where I was able to work until two weeks before giving birth. Working while pregnant wasn’t easy, but I knew I needed money to be able to provide for my son.

I had planned to return to my job after my son was born, but things didn’t work out that way. Cayden had to spend the first three weeks of his life in the neonatal intensive care unit, and then six weeks in a different hospital nearly three hours from home. I chose to resign from my job at the sub shop so that I could be with my child as he fought for his life after his diagnosis of infantile-onset Pompe disease.

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After Cayden was discharged from the hospital, I started to panic. We were low on money, and I had no idea how I would provide for my son, who needed full-time care. Due to his disease, Cayden required much more care than the average baby. He was sent home with a nasogastric tube for eating and oxygen to use while he slept. We also had to give him multiple medications, including an injection twice a day. At that point, I didn’t trust anyone other than myself to care for him.

With the bills piling up and our money running low, I decided to see what resources were out there for single mothers who have children with special needs. Luckily, I found a few different government assistance programs that were able to help us out. While the programs continue to help, they don’t provide enough to live comfortably. I needed to find a way to make more money.

An in-person job has not been an option for me. I don’t have the availability that other parents might, because I am my son’s only full-time caregiver. I take Cayden to all of his therapies and specialist appointments. He also receives a 6.5-hour enzyme replacement therapy called Lumizyme (alglucosidase alfa) once a week due to his Pompe disease. My schedule is already jampacked.

Thankfully, I found an amazing online job that allows me to work from home. The opportunity unexpectedly fell into my lap, and I was more than happy to take it. Working and doing something productive makes me feel like I’m my own person again. I get to look forward to something other than being a mom and a caregiver, and for that, I’m grateful.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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