Hearing the haunting words ‘failure to thrive’ to describe your baby
Feeding your newborn child can be stressful. There are so few things they can control in their young lives. It’s common for children to learn…
Be Rare with Finn — Jay Sandstrom
Jay Sandstrom and his wife, Dani, have two children, Jackson and Finley. Finley was diagnosed with Alagille syndrome as an infant. Since that moment, Jay and Dani have worked to spread awareness about Alagille syndrome and provide a resource for newly diagnosed families that they wish they’d had access to. Through his column, “Be Rare with Finn,” Jay hopes to show that while being a caregiver for a child with a rare genetic disease comes with its challenges, it also brings many opportunities for celebration. Jay aims to provide a glimpse into what living with Alagille syndrome looks like for his son Finley and their family.
Featured post
Parents and son are all on a path of discovery with Alagille syndrome
Our son Finley was born with Alagille syndrome in 2021. Since then, I’ve been on a journey to learn about his rare disease and how I can best support him. This path of discovery has been new to me, both as an adult and a parent. As we approach…
Read more
