My son with Pompe is thrilled about his brother reaching milestones

Despite my fears, my older son has been nothing but supportive

Keara Engle avatar

by Keara Engle |

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When I found out that I was pregnant again, I was ecstatic for my 5-year-old son, Cayden, to become a big brother. However, Cayden has infantile-onset Pompe disease, and I’d be lying if I said that a part of me wasn’t nervous.

Because my second child has a different father, I knew the chances of him also having Pompe disease would be slim to none. But I was nervous that Cayden would be jealous of the things his brother, Kyree, could physically do.

Pompe has left Cayden unable to walk, requiring him to use a wheelchair. He also can’t eat orally, especially since he failed his most recent swallow study. We have to feed him through a gastrostomy tube (G-tube) so that he doesn’t aspirate and get pneumonia.

At 10 months old, Kyree has been eating like a champ for months. More recently, he’s been reaching a lot of age-appropriate milestones and has learned how to sit, roll, crawl, and stand. He’ll even take a few steps if you hold his hands.

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It’s been bittersweet to watch Kyree reach all of these milestones, especially because I wasn’t able to experience that with Cayden. But all of my fears about Cayden being jealous quickly faded once I saw how excited he was to watch his brother learn all of these new skills. He cheers Kyree on with each and every milestone. It’s so sweet to watch.

Two brothers, ages 5 years old and 10 months old, sit in a blue wagon on a sidewalk. The older boy is wearing a Spiderman costume, while the younger boy wears a red Incredibles costume. Both have blankets over their laps as they prepare to watch a Halloween parade.

Cayden, right, and Kyree get ready to watch our local Halloween parade last month. (Photo by Keara Engle)

Cayden used to get jealous of other children his age, and he still does from time to time. But I guess it’s different now that it’s his little brother, and not just a friend from school or a random kid at the playground. He’s starting to realize that he’s a bit different from the other children, but he doesn’t let that stop him from having fun.

I feel a bit silly for having these fears in the first place, but they were valid concerns. I think anybody in my shoes would feel the same way.

My hope is that as Kyree hits more milestones, Cayden continues to cheer him on. It has been amazing to see their relationship develop and flourish. Cayden is so proud of his baby brother. He talks about him to anyone he can, any chance he gets.

I’m anxious to see if their bond remains strong as they get older. If it’s anything like it is now, then I know they will have a forever best friend in each other, which makes me so happy.

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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