Supporting my oldest son, who’s growing up with a chronically ill sibling

While my “Be Rare with Finn” column focuses on my youngest son, Finley, and his journey with Alagille syndrome, Finley is not my only child. His brother, Jackson, is three years older, and while he wasn’t born with a rare genetic condition, he has still been affected over the years.

When my wife, Dani, and I decided to expand our family and have Finley, we thought we were fully prepared for what was to come. She had almost zero complications during her pregnancy with Jackson, apart from nausea during the first and third trimesters. He would have arrived on his due date if the epidural hadn’t slowed things down. Jackson was born healthy, and we learned the ropes of raising a newborn.

As complications piled up while Dani was pregnant with Finley, our feeling that we knew what to expect went out the window. We were so excited during Jackson’s 20-week ultrasound, but we were quickly robbed of that joy during Finley’s when the nurse mentioned how small he was measuring and that they couldn’t see a chamber of his heart.

Recommended Reading

November 17, 2025 Columns by Jay Sandstrom

A boys’ day out brings a welcome sense of normalcy

Finley and Jackson show off their new dinosaurs on Christmas. (Photo by Jay Sandstrom)

Thankfully, after an excruciating wait for an echocardiogram, our providers did see that chamber of his heart. We still didn’t know what was causing his growth issue, though, so Dani and I were not at our best.

While this was happening, we were still raising Jackson, who was about 2.5 years old. It was also late 2020, the height of the COVID-19 pandemic. Talk about a truly awful time in my life. I was not the parent I wanted to be, and that still bothers me.

Finley was born a month early and spent his first two weeks in the neonatal intensive care unit. During that time, I spent the days at the hospital and the nights at home with Jackson, who had a hard time understanding what was going on. He couldn’t wrap his head around why Mommy wasn’t at home when she was at the NICU with Finley.

A month after we brought Finley home, he was admitted to the local children’s hospital for a week. Once again, I spent my days at the hospital and my nights at home with Jackson. His grandma watched him during the day, and while that was fun for Jackson, it wasn’t the routine he was accustomed to. His attitude during that period was difficult, but I don’t blame him. Our lives had been flipped upside down.

Jackson meets Finley for the first time in 2021. (Photo by Jay Sandstrom)

Fast forward to today, and my main goals as a father are to ensure that the boys support each other and know that I support them both. This will take some effort and attention as they grow, especially once they understand that I write a column about Finley. I’ll explain that I hope to show others what daily life is like while raising a child with Alagille syndrome, because that is what I needed in the days after Finley’s diagnosis.

Dani and I are very intentional about teaching Finley and Jackson about Alagille syndrome and what the liver disease means for Finley. My biggest hope is that Jackson can grow to understand that while Finley does require some extra attention in the form of doctor’s appointments and healthcare, that doesn’t mean he is getting preferential treatment. I don’t think there will be any ill will. The boys definitely love each other. They fight like brothers do, but when it comes down to it, they protect each other. And I will continue to support both of them equally.

Note: Liver 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 Liver Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.