As our son grows, we’ll always seek opportunities to advocate for him

Lately, I’ve found it easier to settle into the flow of daily life than in previous years. Routines have developed, and the weekly rhythms now feel familiar — maybe not set in stone, but rarely disrupted in any major way.

Taking our son Finley to day care has become second nature, and everyone there knows about his Alagille syndrome diagnosis. At home, his treatment is seamlessly woven into our day: morning and nighttime medications, added fats to meals, and all the little adjustments that have become habit. Still, I was recently reminded that I can never let myself forget the ongoing need to advocate for him.

Because of his liver disease, Finley is smaller than most children his age. I’ve written about this often, as it’s been a central part of our parenting journey. When Finley was younger, his size was an even bigger focus, but now, as we near elementary school, I see its significance resurfacing. In the past, people would say things like, “Wow, he’s great at walking for someone so young,” not realizing he was actually older than he appeared. These days, the comments and interactions have shifted — he’s sometimes treated like a younger child, since he looks more like a 3-year-old than a 5-year-old.

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These experiences reinforce why it’s so important to seek out opportunities to advocate for our child. I need to help educators, coaches, and others who will interact with him understand the significance of his Alagille syndrome — not so they treat him differently, but so they’re aware of his unique needs. What matters most to me is making sure they know that, despite his diagnosis, Finley should be treated like any other child in the group — even if I have to explain that he has a rare genetic condition.

The goal of these conversations is to foster shared understanding, so those working with Finley know what to watch for — things like excessive itching or, in more serious cases, increased jaundice that we’d need to address.

While this is important information, Alagille syndrome shouldn’t define Finley’s experiences — whether in the classroom, on the field, in the pool, or at the gym.

Finley has been at his day care for so long and started so many activities there that I sometimes take it for granted that the staff already knows about his condition, and I no longer worry about explaining it. But when he enters a new environment, I can’t let myself skip that advocacy step. By now, I’m well practiced at having these conversations; I just need to remember to make them a priority, so Finley is always set up for success.

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.