Roar with Nora

If you’ve met Nora, you know her as a very busy dancing, twirling, bouncing-off-the-furniture, kindergartner whose alter-ego is a lion cub, a fierce-but-playful identity that helps when Nora feels anxious. Her life has been filled with dancing, drawing, books, riding her bike and scooter, playing with her little sister, and exploring nature with her family. Then, the unimaginable happened.


The day after Thanksgiving, her sixth birthday, Nora caught the sniffles. Her cold progressed unremarkably with a fever and lots of coughing over the weekend. By Tuesday she was mostly well, but complained that her leg "felt funny." On Wednesday night, she awoke, unable to walk, her left leg paralyzed. She was taken to the ER and admitted to the hospital that night; by the next day she had lost movement in her right leg as well. You may have read news stories about the rare and mystifying illness that is causing paralysis in kids, acute flaccid myelitis, (AFM), a rare, polio-like condition that affects the body’s nervous system, specifically the spinal cord. Nora's parents and grandparents were terrified to learn that AFM had caused her paralysis. There have only been 300-400 cases of AFM in the U.S. in the last five years, and its precise cause is not yet understood. No treatment has been found to be effective in averting the destruction. The effects of the disease on other children have varied, as has recovery, but we are hopeful and are betting on Nora's youth and tenacity to get every gain possible. From the time she was tiny we've said of Nora that she's the "hardest trier" we know.


While in the hospital, Nora will be engaged in intensive physical therapy and occupational therapy (regaining independence in as many tasks of daily life as possible). Nora has been brave facing the fear and pain of these therapies, and she is making gains. After she is discharged from the hospital, she will need prolonged physical therapy as an outpatient for no less than a year and continuing as long as it helps her to improve her quality of life.

Nora and her family are in their third week in the hospital and the realities of the future are beginning to come to light. The unimaginable has happened to them, and the emotional and physical toll is staggering. Many have asked how they can help, and so we are setting up this fund to allow Emily and Austin to focus on what is critical right now—caring for their girls and meeting Nora’s needs today and going forward. The family is fortunate to have health insurance, but the co-pays and other costs will be far beyond their means. The family’s current apartment is not handicap accessible. We don’t yet know what Nora will need to aid her mobility or what additional accommodations, equipment, transportation, etc. the family will need to provide for Nora's return home and ongoing care.


Nora is curious, imaginative, playful, funny, and sometimes feisty. Her lion cub strength and determination have helped her brave the discomforts and indignities of her affliction and hospitalization, and we believe they'll help her push past the boundaries of her new disability. In the hospital, instead of saying “I can’t do it,” we hear Nora say, "Trying, it’s not working.” The difference is huge. Nora has not lost spirit, and neither will we. She has always been a unique and surprising child, and we can’t wait for her to surprise her doctors, therapists, teachers, and friends by showing us all what she can do.

Thank you so much for your love, concern, and generosity.  ROAR!!