rare disease

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PHOTOGRAPHY

RARE DISEASE

Cooper

Nick

Cooper tells me to come outside. He sits on the picnic table and grabs a small toy guitar. His mom puts Bruno Mars’ Uptown Funk on her phone and Cooper starts singing. Less than four years old, his head is bobbing up and down to the music as he strums his guitar. The afternoon went like that. He kept doing. I kept following. We kept playing.

All of these people have rare diseases. They live all over North America, and I’ve been priveledged to spend time with each of them. Over tea, lots of chocolate, cajun gumbo, even poutin; I’ve learned their stories.

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Annabelle Annabelle is four. There is no treatment for her disease. There is an upcoming trial, but she may not be eligible. But, she doesn’t know that. She knows I just arrived and she wants to play princess. “Come to my room she tells me,” grabbing my hand. I lie down on the floor. For two hours, she dances, twirls, and tells me about her animals—for two hours, she is a princess.

415 252 7818



roberthouser.com

415 252 7818



roberthouser.com

415 252 7818



roberthouser.com

Teresa Teresa is blind. Teresa runs marathons. We met the day before the California International Marathon while I was photographing the project, Seeing Blindness. After a rare auto immune reaction to Ibuprofen, she lost her sight, her hair and 97% of her skin. Now she’s studying for her masters. And running. Her smile is infectious.

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Christabel I first met Christabel to photograph her for a magazine story. During the shoot she told me she was about to lose her hair to chemotherapy. Immediately I wanted to offer her something — something to keep, to hold from the experience. I also needed to bring her back to the shoot we were doing—I could see her thoughts drifting to her cancer. I offered to photograph her when she lost her hair; she declined. I could tell she wanted to just get through it. Almost five years later she called me, out of the blue. “Does your offer still stand?” We spent the next afternoon drinking tea, eating chocolate and taking pictures using only the light from an air shaft on rainy San Francisco day. In the foreward for the book Facing Chemo, she described her experience of the shoot. For five years she had been photographed and scanned by MRI and CT machines; all they showed was her disease. She started to avoid her reflection in mirrors, car windows. For the first time, in these images, she saw herself again.

415 252 7818



roberthouser.com

415 252 7818



roberthouser.com

Kendra I have known Kendra for over a decade. We first met in Vancouver when I photographed her for a pharmaceutical firm. Years later I spent a day with her at her home in South Dakota. She is quite the clothes hound, and I got to see the shoe collection first hand. Her disease has been a constant struggle with numerous operations, weekly infusions and the daily challenge of living with chronic pain; yet, her enthusiasm for life is pervasive. She wrote a book: When Life gives you Lemons. Last week I messaged her on social media that I would be in San Diego for the national MPS conference. Within minutes she replied with a “Yay” full of emojis. There are some people who just warm your day.

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Damon We were in Southern California for a multi-day project for which we rented an historic building to use as a studio. Original hardwood floors and antique furniture had us all walking on eggshells at the outset. In comes Damon—all smiles. We shoot him outside clutching a football with all the comfort of a seasoned running back, his left hand out to camera warding off all blockers. Inside he is game to try on every outfit on the stylist’s rack. By the end of the shoot the entire crew surrounds him on set dancing to Watch Me (Whip/ Nae Nae), with he and his sister leading us through every dance move.

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Nick When I first met Nick, I had come to his small farm town in rural Louisiana to spend the day for an advertising campaign. I didn’t expect to be so inspired by his story. He had never taken a dime of assistance, designed and built his own pedals to be able to drive his car, he even walked his dogs himself—pushing his wheelchair with his feet, backing down the street. A week after the shoot I asked if I could come back to Louisiana every year for a decade to chronicle his story. It’s a project for me, or maybe it’s for us both. On my last visit, he showed me the new coop he had built for raising chickens. Now we share quiche recipes.

415 252 7818



roberthouser.com

415 252 7818



roberthouser.com

415 252 7818



roberthouser.com

415 252 7818



roberthouser.com