In the Alagille community, we found people who are speaking our language
I don't want my son Finley to feel isolated by his condition
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I had never heard of Alagille syndrome until my son Finley was diagnosed with it. And in the five years since he was born, I’ve met only one person — outside of the people I’ve met in the Alagille community or our direct care team — who knew anything about it.
This felt incredibly isolating at first. As a parent, I work hard so that Finley doesn’t feel alone with his condition.
When my wife, Dani, and I started meeting other Alagille parents, as well as adults living with the condition, it was like finally finding someone who spoke the same language we did. Someone who understood the nuances of seemingly unending doctor’s appointments, someone who could tell us which medications they’d tried and which ones had worked for them. It’s been a small but mighty resource network, and I am proud to be a part of it.
Meeting others like him
Finley Sandstrom, 5, enjoys reading a book about a girl with Alagille syndrome. He calls it his “itchy” book. (Photo by Jay Sandstrom)
The most important thing, however, is that Finley gets to meet others like him. I think he was too young to understand this the first time he met other children with Alagille, but I am looking forward to the next time, because he is beginning to show some awareness about his condition. He is putting together the puzzle pieces about what it means to have this liver disease.
He’s also remembering his doctors’ names, and is excited to share his progress with them at his upcoming appointments. He is also starting to understand why he needs to have blood drawn, and at his last lab visit, he did an amazing job of sitting still for the lab tech. I used to have to bear-hug him to keep him still, so I am glad these visits are becoming less scary for him, even though I wish he didn’t need them.
Finley is really enjoying a book developed by Mirum Pharmaceuticals, the maker of Livmarli (maralixibat), a medication Finley has been taking since he was 1. The book, “Frankie Finds Her Voice,” tells the story of a girl with liver disease, and it has helped Finley understand that he is not alone. It is a great piece of representation for him that has become a mainstay of evening reading.
Outside of the Alagille community, Finley may never meet another person with Alagille syndrome. If a book can help him feel less alone, then I am grateful. I hope I can find other areas where Finley can feel represented and not alone on his rare disease journey.
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.
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