Our son’s Alagille diagnosis was our introduction to rare diseases
Before having our son Finley, our exposure to the rare disease world was limited. Most people we’ve encountered since receiving his diagnosis have had the…
Before having our son Finley, our exposure to the rare disease world was limited. Most people we’ve encountered since receiving his diagnosis have had the…
For me, one of the most dreaded parts of being the parent of a child with a rare genetic disorder is getting lab work done.
Daily treatment with Bylvay (odevixibat) safely and effectively eases itching and lowers blood bile acid levels, a sign of liver damage, in children and adolescents…
One thing I aim to do by writing this column is to bring some focus to what life looks like when raising a child…
Traveling with small children is challenging. While the destinations that are visited and the memories that are created are worth it, getting there entails a…
April 19 is a day set aside to raise awareness of liver diseases such as Alagille syndrome. It’s World Liver Day, a global…
I love shoes. Shoe collecting has been a hobby of mine for quite some time. A good pair of sneakers or boots can take your…
There are several words I’d use to describe my 3-year-old son, Finley. My wife, Dani, started a tradition for our two boys where each night…
A Canadian Agency for Drugs and Technologies in Health (CADTH) committee has recommended that Livmarli (maralixibat) be covered by the country’s publicly funded health…
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…