Does anyone on here know anything about this syndrome, or know anyone who's had it?
I've just found out today that my best friend has it. I haven't done any reading yet, & probably won't get to til tomorrow now, but if anyone knows anything about it, let me know. Would like to know a bit more. Positive stories would be good too.
She is having a spinal tap next week & blood transfusions over the coming weeks.
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