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Here's a note from Ellie's doctor, Dr. Vanderver:
Ellie is one of those kids who is a special star. She is bright and vivacious. She has beautiful strawberry blond hair and freckles. She fills my medical charts with her drawings, and at every visit, she teaches me about the latest fashion trends for little girls: pink glittering sneakers, bright neon bracelets, vivid nail polish with decorated flowers, and fluorescent socks (“non-matching of course Dr. Vanderver!”).
Unfortunately, she is special for another reason as well. She has an unsolvable medical mystery. She catches all of our attention with the bright signal in the critical insulation of the nerves in her brain called myelin. Ellie’s myelin is very sick. She is known to most experts in myelin problems across the world because we have not been able to diagnose her or stop the disease that is slowly crippling her.
There are days when her speech is difficult to understand and it is hard for her to do one of her favorite things, draw. She has had to endure more medical poking and prodding than most children with life-threatening diagnoses such as cancer. Twice, doctors have removed a piece of her brain to try to provide her worried parents with answers...all to no avail. We still don’t have answers. Not because Ellie is not brave (she is). Not because her parents wouldn’t move heaven and earth to fix this for their little girl (they would and have flown everywhere seeking help). And not because her doctors aren’t trying their best. We don’t have answers simply because there are not yet tests for the problems Ellie has.
The best guess for what is making Ellie sick is that her immune system has made a mistake, and has decided to attack her myelin and brain. But there is no science, and no test, to know which cells in the immune system, or which antibodies, are doing this. No test means no name for her disease. No name means no treatment. And no treatment means at each visit, I watch Ellie continue to be sick, worrying that the next time I see her, she won’t be able to tell me what is “in” for other little girls, and that I won’t have her drawings to hang in my office.
We need to help science catch up with Ellie, and catch this little star before she falls.