Michelle, mother of Alex (age 7) and Julianna. Julianna had a severe form of Charcot-Marie-Tooth disease and died at age 5.
Julianna’s beginning: Charcot-Marie-Tooth disease
In this Zoom interview with CPN, Michelle, mother of Alex (age 7) and Julianna, who was diagnosed with a severe form of Charcot-Marie-Tooth disease, gives an overview of Julianna’s life, including the diagnostic odyssey, her hospitalizations, their decision to stay at home with hospice, and her end of life. “That last hospitalization, we were finally introduced to palliative care … I think everyone kind of knew it was going in that direction, and so they finally offered it to us and it was such a relief finally to be able to talk about these things that were still difficult. But to be able to talk to a medical team about them, about our fears, what we wanted, what may happen and what could be done, that kind of thing.”