I had the good fortune (in more ways than one) to present at the American Brain Tumor Association’s Patient & Family Conference “Survivor Stories” session (yes, that’s a mouthful).
Perhaps the most inspiring presentation was by JoAnne Colucci about her daughter Rosie who is seven years old.
At the conference I learned that Rosie’s main brain tumor is a hypothalmic/chiasm optic glioma. It is an inoperable brain tumor located in the center of the brain and causes all sorts of problems.
Sounds pretty formidable? Take a seat, the list has just started. She also has central precocious puberty (CPP), pituitary gigantism, optic nerve atrophy, acquired obstructive hydrocephalus, neurofibromatosis and hypertension.
As a result, she’s had chemo at least 142 times and roughly upteen surgeries (i.e. a lot).
Here’s the kicker: she’s ridiculously upbeat. From everything her Mom said, she’s a happy kid. If you ask, and even if you don’t, she’ll do a rap about her condition. She speaks to audiences large and small. On top of that she raises $$ for charity. Last year she and her sister raised $25,000 for the Chicago Dance Marathon which does to the Children’s Falk Brain Tumor Center at Children’s Memorial Hospital in Chicago which is where Rosie goes for her brain cancer treatments.
Want to learn more? Want to donate to one of her charities? Here’s a link to her website: http://www.research4rosie.com/TheJourney.html
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