Marion Glaser shares her experience as a parent caregiver in Moose Pass, Alaska, where her daughter Violet receives weekly infusions for Gaucher disease. She opens up about navigating long-distance care, full-time jobs, and the importance of connection in rare disease communities.
Transcript
My name is Marion Glaser and I am connected to the Gaucher community through my daughter, Violet Labenski. I will be writing about being a caregiver for a child with Gaucher.
We live in a super small community. Moose Pass has 212 people, so there’s no doctors here. There’s no home health care here. We have to go to the next town over for her weekly infusions. We have to go to the next city, which is Anchorage, 100 miles away, to see the doctors. She has weekly infusions, so she was in the local hospital 52 times last year for her infusions. And then for other appointments, she went to Anchorage 22 times.
Her dad and I work full time and so we have zero sick leave for ourselves, so we just have to manage as well as possible and try not to get sick.
When Violet was diagnosed, the first thing I did was go online. Social media is bad for a lot of reasons, but social media is really good for finding other people in your situation, when you have a rare disease or when you’re caring for someone with a rare disease. So I went on there and I found other moms who were in a similar situation. I made it a mission to become their friend, and that’s really helpful.
I would tell other parents that Violet has been on treatment now for four years, and she’s really healthy compared to where she started. Today is her last day of first grade. She’s really excited for summer break, but I know she’ll miss her friends at school. She’s really hoping to learn how to ride her bike this summer. It has training wheels, so hopefully she will enjoy learning that.
We’re just enjoying life in Alaska as well as we can.
