Who tells your story?

I never imagined the death of a U.S. President would bring me so many memories of Florence.

Yet, there I was this weekend, reading about President George H. W. Bush’s young daughter Robin, her battle with leukemia and how her death affected two presidents and our nation.

For those who have not read Robin’s story, she died in 1953 of leukemia just before her fourth birthday. After Robin’s death, the former President, in talking to his mother, said:

“There is about her a certain softness. Her peace made me feel strong and so very important . . . but she is still with us. We need her and yet we have her. We can’t touch her, and yet we feel her.” [source]

I read these words several times. I was again reminded how the loss of a child is both personally intimate and yet globally understood. And how private the pain can be. My college years coincided with President George H. W. Bush’s time in office. I never knew this story. And clearly, he never forgot Robin. In his own way, he told her story through his life.

The Loss of a Sibling

Robin’s death also deeply affected the second President Bush, who was seven years old when she died. The Washington Post describes the day when young George W Bush came bounding to his parent’s car as they drove up to his school. He was excited to see his sister only to learn the horrible news.

This story reminded me of the night we told Laura that her sister was not coming home. Her only question was “How will Florence live in the hospital forever?” It was so full of hope and life. Her reaction was not fear of death but questions of how to live.

How will we live? How will we remember?


The past four weeks in Durham have been all about Hamilton. We were some of the lucky ones to see the show at DPAC.

The final song of the show, “Who tells your story”, had me again thinking of Florence. In the song, Burr sings “But when you’re gone, who remembers your name? Who keeps your flame?” Florence Forth does that, of course.

With Florence Forth, we are telling Florence’s story and keeping the flame alive for all those who have autoimmune encephalitis. Last year, we raised $70,000 to support the Autoimmune Encephalitis Alliance and its efforts to raise awareness of AE and improve treatment.

Thank you for being part of this amazing community and for telling the story.

Registration is now open. Help us tell the story and keep the flame alive.