Posted by: getthenac | April 6, 2010

Ballerina Twirls

From Nancy Humphrey

I’m pretty sure, because I’m the mother of three daughters, that it was this quote that got me:  “She started having trouble with ballerina twirls.”

That came during a telephone interview with Alison Kirk, a Nashville mom who lost her 9-year-old daughter, Caroline, nearly three years ago from a rare genetic disease called Niemann-Pick. She was describing how she first realized that there was something wrong with Caroline when she was 3. It took another two agonizing years to get a diagnosis.

For years, I’ve written stories for Vanderbilt about patients, their illnesses and their families. I was interviewing Alison, one of the most eloquent and composed people I’ve ever interviewed, for a story I’m working on about Nashville’s Alive Hospice for the summer issue of the Medical School alumni magazine, Vanderbilt Medicine.

I can’t imagine the pain of losing a child. But I know one thing. If it happened to me, I would hope that I would handle it with as much clarity and grace as Alison. With the help of Alive Hospice, founded nearly 35 years ago by two Vanderbilt physicians, John Flexner, M.D., and David Barton, M.D., she and her husband, Doug, brought Caroline home to die in the summer of 2007.

Her parents took her on walks around the neighborhood. She sat on the porch with her father while he played the guitar. She died, with her parents on each side, at home on Oct. 30, 2007.

“She loved to be outside, the wind in her face,” her mom remembers. “Her home was her refuge, the center of her little world.”


  1. I’ve seldom been so touched.
    ““Her home was her refuge, the center of her little world.””
    Her parents must be extraordinary…what a lucky little girl to be so loved and cared for.

    I would like to know more about Alive Hospice and hope when the article comes out in the summer issue of the Medical School alumni magazine, you will allow me to read it and post some or all on my blog, if it fits there.

    One of the things we all need to face is end of life options…whenever it occurs and we should have our affairs in order.

    The call to pull the plug rather than exist endlessly on a respirator should be addressed.

    I know now I’m ‘preaching to the choir’ but I’m a patient who works to get educated about the most current medical choices and to pass it on.

    I am the mom of 2 daughters and 1 son.
    Grandmother of 2 grandsons and 3 granddaughters.
    Great- grandmother to 5 g.grandsons and 4 g granddaughters. I cannot imagine losing a child either.

    Thank you for this story.

    Best wishes to the parents, family and friends of little Caroline, the child who will now always have the wind in her face.

  2. Can you all add a link to the stories you reference in the blog?

  3. The story hasn’t been published yet, but when it is we’ll post a link to the blog. Thanks!

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