4 ms·

wow, vanilla comment but this is just really inspiring. kudos to her and best wishes to y'all going forward.

• boogies 6y ago
  I’ve wanted to give comments multiple upvotes before, but this story makes me wish HN had some sort of ‘super favorite’. #PiracySavesLives
  • wincy 6y ago
    At first blush I laughed at the hashtag, but it’s not too far from the truth. With the a la carte model of $30 a paper there is no way she could have read the literature. My wife would read the papers slowly and look up words as necessary. We read about a surgery that could potentially help our daughter, which the head of neurosurgery declined to do. We then said we’d take her to another children’s hospital (it turns out our insurance actually wouldn’t have covered that, but we didn’t know we were bluffing) and he begrudgingly agreed to perform the surgery. Had to get the expert who is a professor at Washington University to give a second opinion recommending surgery before it happened. Most of the doctors really didn’t like my wife, there are notes about her obstinance in our daughters file. But our daughter is doing well, and I’m glad I married someone so doggedly persistent.
    • jacquesm 6y ago
      Elsevier could make a lot of goodwill by adding a 'compassionate support required' checkbox on their download pages.
  • nitrogen 6y ago
    There is a "favorite" link which adds a comment to a public list of favorite comments on your profile.
• wincy 6y ago
  Thank you! She’s doing great, at six months the doctors said she wouldn’t make it to a year. But she is two now and her retired engineer great grandfather built her a little custom wheelchair that affords her a lot more freedom and mobility. At first she’d only go on the wood floors but has gotten stronger and wheels around the carpet now too. She has a five year old sister and they play together all the time.