Lars and Elizabeth
Parents of Adelaide, age 3 with ‘shrinking white matter’ disease, and Charlotte (8) and Levi (6). At the time of this interview, Adelaide was age 3. She is now 5 years old.
Now I understand what palliative care is!
Mom of a 3-year old with a rare, life-limiting illness: “It just kind of helps keep a good quality of life going. We’re not necessarily end of life care right now, we’re just looking at making sure her quality of life is where we want it to be. “