My younger brother doubles as a best friend for my son with Pompe

As a rare disease mom, I'm grateful for my unusual family dynamic

Keara Engle avatar

by Keara Engle |

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When I was younger, I never imagined that I’d become a teen mom. I was scared to share with my mom the news that I was pregnant. I didn’t know how she’d react because she’d been a teen mom, too, and that was the last thing she wanted for any of her daughters.

Thankfully, she was very supportive and understanding. She assured me that she’d be there for her grandchild and me every step of the way, and she’s kept her word.

My mom had just given birth to my baby brother, LJ, seven months before I found out I was pregnant. That means my now 5-year-old son, Cayden, has an uncle who’s just 15 months older than him. Finding out that I was having a boy made me so happy. I was anxious to see what kind of relationship my brother and my son would have since they’re so close in age. It’s safe to say their bond is very strong.

Cayden had to stay in the neonatal intensive care unit for three weeks after he was born, but when I finally brought him home, my younger brother absolutely adored him. He wanted to hold Cayden all the time and would follow us around everywhere we went. Sadly, after only a week at home, Cayden had to be hospitalized again because his newborn screening test results showed that he had infantile-onset Pompe disease.

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A toddler boy gives his baby nephew a hug while looking into his eyes. The boy is wearing blue Cookie Monster pajamas while the baby is wearing a mostly white onesie. The boy's older sister sits behind them, supporting the baby.

LJ, left, holds Cayden in 2018, with Keara’s younger sister, Kiyah, in the background. (Photo by Keara Engle)

When we left for the hospital three hours away, my brother was devastated. Fortunately, my mom brought him so he could visit his nephew. Of course, I missed my little brother, too. I’d spent a lot of time with him during my pregnancy and even had him sleep with me for a few months so that I could prepare for what was coming.

Over the years, the boys have been able to grow up together and are now closer than ever. We visit my mom’s house three or four times a week, and every time we go, Cayden and LJ end up hanging out. They like to play video games, watch TV, and play with toys. LJ will often ask to spend the night at our house when it’s not a school night.

Last week, both boys had spring break. LJ came and spent the night before Cayden was due for his Nexviazyme (avalglucosidase alfa) infusion. I like when LJ comes over on infusion days because it helps keep Cayden occupied. His infusions can last over six hours, which is a long time for anybody, let alone a child. LJ’s company helps the time fly by.

Two young boys sit on a couch playing Candy Land with a woman, seen by her arms and part of her chest. The larger boy on the right is dressed in gray; the smaller boy at center wears a white shirt.

Cayden, center, LJ, right, and our infusion nurse, Angel, play the board game Candy Land. (Photo by Keara Engle)

It’s heartwarming to see how much LJ loves and accepts Cayden. He’s been very gentle with my son from the start and is always offering to help. He enjoys helping me feed Cayden through his feeding tube, turning off Cayden’s suction machine during his breathing treatments, pushing Cayden around in his wheelchair, and helping Cayden get back up if he falls over while sitting on the couch.

Although my family dynamic may be a bit different from most, I wouldn’t have it any other way. It’s been amazing to see the boys form a bond over the years. Having a sibling and a child so close in age may seem odd to some, but to me, it’s one of the best things ever!

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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