Seattle's Soulumination Captures the Beauty of Terminally Ill Children Through Photographson February 6, 2014 @ 5:45 pm (Updated: 8:15 am - 2/7/14 )
"I noticed that she had what looked like Mercedes symbols in her eyes. We showed the doctor and she sorta shined a light and she goes, 'That's not good.'"
Charlotte, also called Cha Cha by her family, only got sicker. By the time she was one year old, she had to have a feeding tube.
"Probably around nine months we got sort of a diagnosis, not specific but that she had a mitochondrial disorder and/or a lysosomal disorder. Five years was our longest hope for her to survive. It was pretty crushing."
Angie was able to care for Charlotte at home, but being bedridden and surrounded by medical equipment, she was difficult to photograph.
"Even though she is this beautiful, golden, curly haired chubby cheeked angel, to photograph her would be pretty challenging at times because sometimes she would have a seizure or sometimes her eyes would be funny because of her cataracts. Or sometimes she would be in pain so her face would show that. But sometimes you could just catch her in the sweet moments where she was cooing. The challenge of capturing her spirit and true her essence could be pretty daunting. But when I saw that story about Lynette I just thought, if anybody could do it, she could."
Angie contacted Seattle's Lynette Johnson, who has been photographing families for 26 years.
"Nineteen years ago my niece was stillborn and I went to the hospital and took a few photos of her. As I left the hospital and hit the street this idea popped into my head: If I could do this for my niece, I could do it for anybody."
Lynette eventually connected with Seattle Children's Hospital and offered to take free portraits for families.
"So we're working with children from birth to eighteen with life threatening illnesses," Lynette said. "Some of our children survive but sadly most of them are going to have a much shorter life than the average person. We also deal with adults at the end of their life as a gift to their children."
Over the past eight years, through her non-profit Soulumination, Lynette has done beautiful, complimentary photography for over a thousand families, including photos of Charlotte.
"Charlotte slept for the whole damn thing!" Angie exclaimed, laughing. "Charlotte never slept and that was part of her disease and part of her problem. But here she comes, Lynette, with her cameras and Charlotte is out like a light. The sweetest pictures, the most amazing pictures came from it."
Lynette says photographing these sick or dying children and parents is more difficult but more beautiful than she ever expected.
"The power of these photos, especially the ones that are more urgent and end of life, it is powerful," Lynette said. "And you do realize you're kind of walking on sacred ground. They're welcoming us in, they trusting us to come into a part of life that is kind of your absolute worst nightmare. They trust us to come and do a good job."
Angie thinks Lynette was born to do this job. Where most people get nervous and uncomfortable around sick children covered in medical equipment, "Lynette was just undaunted by any of it," Angie said. "'Oh my God, she has the most beautiful hair. Oh my God, she has the most beautiful skin. Oh my God, she is so sweet.' There is a respect and a solemness at times. But also just the slightest undertone of sense of humor because that's what keeps everybody sane, you know?"
Charlotte passed away when she was 8 years old, but Angie keeps Lynette's photos around the house and in her purse so she can look at them every day.
"For me it's life saving because Charlotte is part of my life everyday, three years past. She changed me, her work isn't done. She's done doing it. She's tired, she got to go, she's resting. But her influence on my life, and what she came here to accomplish, is now my job."
To celebrate Lynette's 60th birthday, Soulumination is hoping 1,000 people will donate $60 each to help fund the non-profit.
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