Photo by Sam Moqadam on Unsplash
Marian McGlocklin, the five-year-old daughter of Monrovians Sara and Paul McGlocklin, has a rare genetic disease called Niemann Pick Type C, which can be fatal.
An experimental drug called Adrabetadex seems to have made a dramatic improvement for Marian, but the drug's manufacturer has announced that after October Adrabetadex will no longer be available, saying that clinical trials give no clear evidence that the drug helps.
Ten doctors have written the company urging it to continue making it, and Marian's parents fear she will die if the drug is discontinued. https://is.gd/k3eCuE
- Brad Haugaard
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