Counting my blessings as a rare disease mom

Thanksgiving made me realize how much I have to be thankful for

Keara Engle avatar

by Keara Engle |

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This year, Thanksgiving felt quite special. For starters, it was the first time I celebrated with both of my kids. My youngest, Kyree, turns 1 three days after Christmas, and so far, his first holiday season has been so much fun.

As I reflected over the holiday, I took some time to count my blessings from the past year. The list is lengthy, but everything on it deserves special recognition.

This year, I gave thanks that my 5-year-old son, Cayden, was home. Because of his infantile-onset Pompe disease, we’ve spent numerous holidays cooped up in hospital rooms. Medical facilities sure don’t get you in the holiday spirit, especially when you’re watching your child fight for his life due to something as simple as the common cold.

Two years ago, Cayden was in the hospital during Thanksgiving. My grandmother offered to stay with him for a few hours so I could go eat a holiday meal, which I was grateful for. However, it felt so odd being surrounded by family and food while my baby was sick. Thankfully, we didn’t have to go through that this year.

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I’m also thankful for the scientists, doctors, and researchers who have spent years developing the lifesaving enzyme replacement therapy that Cayden receives every other week. Without this treatment, many children with Pompe disease wouldn’t live to see their first birthday. That is a scary realization.

Cayden has been on a newer enzyme replacement therapy called Nexviazyme (avalglucosidase alfa) for about a year and a half. He’s made some amazing progress since he started the medication, and it’s been nothing short of blissful to watch.

Lastly, I am thankful for the team of nurses who help my son. One goes to kindergarten with Cayden every day. She’s the reason my son is able to go to a normal public school like most children his age. Without her care and dedication, that wouldn’t be possible.

Cayden also has an infusion nurse who comes to our home to administer the Nexviazyme. We’ve had the same nurse since Cayden was 1, and she’s become like family to us. When this nurse is at our home, she does an amazing job — not only with Cayden, but also with Kyree. I truly couldn’t ask for anyone better.

It’s been bittersweet to reflect and realize how much we have to be thankful for. Oftentimes, I let my mental health get the best of me and I forget to sit back and count my blessings. But I can honestly say that, as much as we’ve been through over the last few years, I am thankful for each and every day that I get to wake up and see my sons’ smiling faces looking back at me.

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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