Parents of Abby, age 5, and Tomas, age 4. Abby has Leigh's Disease, a rare and life-limiting form of mitochondrial disease. Abby is receiving an experimental therapy.
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I may not be able to save her, but I can give her the best life possible.
When your child is in an experimental clinical trial ….
Finding an experimental trial, study drug.
I learned about palliative care and thought, that’s exactly what we need.
I wish somebody had told us about palliative care at the beginning.
I wish there had been more support and fewer decisions at the beginning.
When it’s not a good fit.
The elephant in the room: admitting my child is sick and complex
Preparing for the worst and embracing the present.