Why community is important for parents of children with Alagille
Finding others who share similar rare disease experiences is priceless
I normally reserve this column for sharing stories about my son Finley, who was born with Alagille syndrome in 2021. Obviously, he deserves the focus, as he’s the reason I’m writing this column to begin with. I’ve taken a few detours along the way to discuss the importance of caregivers taking care of themselves, which is what I want to cover today.
But this column isn’t just about taking care of ourselves; it’s also about tapping into the community around our children’s rare disease to fight the isolating feeling that can come with the diagnosis.
I’ll forever remember the feeling of receiving Finley’s diagnosis. I felt so alone at that moment. When the news was delivered, it was early April 2021, during the COVID-19 pandemic, and only one caregiver was allowed at the doctor’s appointment. My wife, Dani, took Finley to the appointment while I listened on the phone as I sat outside our older son’s daycare center. I can recall that moment like it was yesterday.
Finley Sandstrom, foreground, plays with his brother, Jackson, at the park. (Photo by Jay Sandstrom)
The news that Finley had Alagille syndrome wasn’t surprising at that point in our journey. We knew something was going on, and that Alagille was likely the cause. There was some sense of relief in identifying what was happening to our son, but that didn’t alleviate my worries and fears. However, it did allow me the opportunity to focus my attention.
It was a strange experience as Dani and I continued to learn about Alagille syndrome and navigate Finley’s care. Getting used to introducing our son as having a rare disease was challenging. Almost no one I encountered during Finley’s first four years of life had heard of Alagille syndrome.
I’ve since crafted my elevator pitch to share with others about what it means to have Alagille. I’ve also found myself building up walls, as people just can’t fully understand how it affects Finley’s life.
It took over a year for Dani and me to speak directly with another parent who was raising a child with Alagille syndrome.
Just like getting the diagnosis over the phone, I’ll never forget that conversation. It was like speaking to someone who shared a language with me for the first time. I could ask questions they understood. Instead of being the one who had to explain the circumstances of my son’s health, they already knew the details, and we could explore conversations about Alagille in a way that had been limited to appointments with our gastroenterology team.
That was an extremely meaningful experience. Over the years, I’ve had the good fortune to play that role for a few other families. Watching their body language and tone change as they were able to break down some of those walls is a bittersweet experience. I appreciate the opportunity to help someone through shared understanding, but I wish it didn’t involve the topic of liver disease.
Finley Sandstrom loves to get creative with his toys. (Photo by Jay Sandstrom)
Alagille is a rare disease, so it can be hard to make those types of connections. But it’s something I hope to do more over time. Bouncing stories off each other and sharing resources makes you feel less alone on this journey. Creating that connective tissue to help the Alagille community thrive is one of my goals.
In addition to making these types of connections, I also hope to see more fathers involved in advocacy. Obviously, there are plenty of us fathers out there, but from my experience, I see more moms than dads getting out there and advocating for their children.
I hope to set the example that we men can also do this kind of work. We should be out there connecting with one another, creating support networks, and sharing our stories. Having multiple points of view, from both the moms and the dads, is beneficial.
I’ll continue doing this work in hopes that it’ll help someone like me. While meeting people in person may be harder than I’d like, using resources like this column is a great first step. So please take this information and find ways to connect with others in this community.
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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