Each day, we at Global Genes, read the stories of parents who are raising children with rare and fatal diseases. They watch their children go through intense suffering, hospitalizations, and pain that most adults won’t ever have to endure. They make choices about whether or not to enter their children into clinical trials or allow them to take black box medications.
In recent news stories, a family, the Snows, came out about their decision to allow their five-year-old daughter, Julianna, with Charcot-Marie –Tooth Syndrome to choose palliative care at home instead of prolonged treatment at the hospital.
To some the idea of letting their child select their own brand of toothpaste is a difficult decision, let alone their life-or-death medical decisions.
You’re going to read a lot of stories and a lot of comments about this family, but we want to know what you—as parents of children with rare disease—would (or maybe even eventually will) do in this position? Comment below and we’ll feature some of your responses in a follow up piece.
To read more about Julianna’s story check out the following links: