A couple of weeks ago we ran an interview with Rick Guidotti of Positive Exposure. Rick – a photographer who used to shoot the world's top models for companies like L’Oreal and Yves Saint Laurent – now travels the globe photographing children with genetic differences. His mission? To “(change) our ideas of normal."
I went into Positives Exposure’s online gallery to choose a photo to run with the interview. Out of hundreds, one jumped out at me. It was of a girl in glasses and her expression conveyed spunk, grit and charm. I asked for this image but was initially sent a different one. I went back to ensure we got ‘our girl.’ It arrived with the name The Amazing Pauline!
We ran the blog and it was only after that I learned that Pauline (photo right) had died five years ago.
I asked her mom, Catherine, to tell us a bit more about her daughter.
Pauline Wells Burzio was full of life and mischief! She loved her friends, school, sports and singing in the church praise band. Living with 18p-, a genetic condition, she endured many surgeries. She died in 2007 at the age of 13 due to a brain bleed after heart surgery. She is survived by her family and three awesome brothers: Ashton, JB and August.
She's also survived by her first ‘best’ friend – Rebecca (photo left above). Says Catherine: "Our families met in 1999 at the Chromosome 18 Registry and Research Society's annual family conference. It was the first time both of our families attended and we hit it off from the start. Pauline was five years old and I think Rebecca was three, but they became fast friends. Rebecca still calls Pauline her first friend."
Pauline’s family lived in Virginia and Rebecca’s family lived in Maryland, so they split the two-and-a-half hour drive by meeting in the middle – for lunch or a weekend outing.
“We tried to visit face to face as often as we could,” Catherine says.
Rick sent me this photo of the pair. You'll notice that Pauline isn't wearing her glasses in this one.
Catherine still volunteers for the Chromosome 18 Registry and Research Society that brought them together. You can read more about Catherine and Pauline here.