Soulumination Documents the Priceless Yet Fleeting Joy of Families with Terminally Ill Children (PHOTOS)Meredith Carroll
Even if you don’t believe in God, you’ll have to agree that Soulumination is doing God’s work.
Lynette Huffman Johnson is a professional photographer who has long snapped people during their most joyful moments — think weddings and births. But when her sister-in-law had a stillbirth in 1996, a social worker suggested Johnson mark that occasion with photos, too.
While she said she left the hospital shaken to the core, the photos were part of her family’s healing process, and she knew that if she could do it for her niece, “I could do it for anybody,” Johnson told Babble.
And she does. Free of charge. But she doesn’t do it alone anymore — a team of 35-40 photographers in the greater Puget Sound area of Washington offer their services to families with children 18 and younger — some as young as minutes old — who are facing life-threatening illnesses in an effort to help “have the memories close and clear,” Johnson said.
Soulumination provides each family with a hand-made album, with each person at the shoot also receiving a brag book filled with pictures, the mom getting a little bracelet, and a local frame shop donating a 5×7 framed photo. The organization remains local in an effort to stay “heartfelt,” but Johnson and her paid staff of three occasionally help, upon request, families in other parts of the country who want to preserve the delightful faces of their sick little ones just by personally picking up the phone and calling around to find photographers who can help.
Johnson once had an art book that said of creating projects: “You have your brush, you have your colors, you paint paradise and in you go.” And that’s what she and Soulumination have been doing by honoring these beautiful young souls and their families through photographs.
Take a look:
Soulumination 1 of 26
An organization whose mission is to help families with their private grief through public education.
Alesia 2 of 26
"Alesia was born on April 8, 2011 and succumbed to kidney failure 16 days later. She was the little sister of Choya, and the twin sister of Alexa, who also passed away. Her mother remembers her as 'a very sweet and lovely child.'"
Aaron 3 of 26
"Aaron, the son of Rachell and Cory, was born on May 21, 2008 and passed away in October of 2011. He suffered from renal insufficiency, pulmonary fibrosis, hearing loss, and an inability of his blood to clot. The symptoms were caused by a first-in-the-world genetic mutation that doctors call 'Aaron's Syndrome.'
'When he smiles,' Aaron's mother said before he passed, 'his eyes let you know he is happy. He likes to recite lines from his favorite movies and uses them to communicate, whether it be with his doctors or nurses or his family. He jokes around a lot. You know he likes you if he shoots you with his Nerf gun. And he is an incredibly strong little boy: even after having well over 500 needle pokes, he still does each one without crying, and holds his arms up after and cheers, â€˜Tadaa!'"
Alexis S. 4 of 26
"Alexis was born on November 18, 2008. She is the little sister of Joshua. Alexis, who was photographed by Soulumination the day after she was born, suffers a variety of conditions, including auricular condylar syndrome, hydrocephalus, and an intraventricular hemorrhage.
'Alexis is always full of smiles and so happy to be held and cuddled,' her mother says. 'Even after a painful procedure, she freely shares smiles once she is comforted. She is ever strong and resilient!'
When she was four months old and being treated in the Children's Hospital Pediatric Intensive Care Unit, she would always open her eyes and smile at the people coming in to care for her. 'She somehow seemed to know they were trying to help her, and she wanted to show her gratitude.'
Alexis' family is tremendously inspired by their little girl. 'We feel confident that Alexis will survive; she continues to surprise us with her fortitude, grace, and charm,' her mother says."
Andrea 5 of 26
"Andrea, the daughter of Edna and Juan, was born on March 26, 2010. She was diagnosed in utero with Wolf-Hirschhorn Syndrome, and her doctors told Andrea's parents that she would pass away before being born. Andrea proved them wrong, and when she was born her doctors again said that she would not live more than a few minutes. 'But the pastor baptized my daughter and she did not pass away.' Edna says. 'The doctors are always telling me she won't make it for long but she's always proving them wrong, thanks to God.'
Andrea's parents love her smile, which 'shows her personality. And when she was born, and the doctors placed her on my chest, she looked up at her dad with the sweetest eyes—they described her personality right there.'"
Catherine 6 of 26
Catherine, or Kate, in her mother's words, 'died in my belly on December 18, 2011. On December 22, I delivered her stillborn. She was a perfectly healthy baby—her death was caused by a placental abruption.'
'In essence, we never got to see Kate alive," her mother adds, 'but when I delivered and we had the opportunity to hold her all day, we began to call her Sweet Kate. She was beautiful, peaceful, and sweet. Kate was truly a blessing in our lives that we will never forget. In Kate's brief time here, she has given us so much. She has taught us and our friends and family what's really important in life.'"
Emily 7 of 26
"Emily was born on October 1, 2003. Suffering from leukemia, she began chemotherapy when she was three days old. She is the daughter of Erich and Colette, and has a sister, Mianna Marie, who donated bone marrow to her in April 2004. 'Emily is always smiling,' says her mother, Colette. 'She even worked up a smile for the nurses on the day of the transplant. She is so determined! She just never gives up on anything until she gets it done. She is always just cracking us up.' With her cancer in its second remission, Emily is on her second year of maintenance chemotherapy, and has learned to eat, walk, and speak in sign language. She is doing extremely well, against all odds and expectations. 'They told us they were hoping for six months,' her mother says. 'It's been nearly four years now.'"
Hailey 8 of 26
"Hailey was born June 26, 2000 and passed away on August 29, 2007. She was the daughter of Crystal and the older sister of baby Keauna. Hailey loved her status as 'big sister.'
Hailey was two years old when she was diagnosed with Stage 4 neuroblastoma. She had a softball-size tumor located in her lower left abdomen, and other small spots in her leg and head. She went through six rounds of chemotherapy, surgery to remove her tumor, a stem cell transplant, radiation and an oral medication. Then her cancer went into remission.
Hailey had gone to preschool and kindergarten and was ready for summer and her upcoming birthday when she began feeling pain in her legs and back. Soon, she was screaming in pain and on Tylenol around the clock.
In late June, her family brought her to Seattle's Children's Hospital, and found that her neuroblastoma had returned in her liver and bone marrow."
Hunter 9 of 26
"Hunter was 15 years old when he passed away on April 30, 2012, from pneumonia brought on by Joubert syndrome. He is survived by his mother and father, and his brothers Alec and Kyle. 'He loved to laugh and hug, and always had a thumbs-up for you,' his parents recall. 'He was a very loving child.' His mother remembers how 'his face would light up with a huge smile every time I would walk into the room, and he would put his arms out for a hug.'"
Jane 10 of 26
"Little Jane passed away on November 29, 2011, four days after she was born. She suffered from 'total brain damage' with an unknown cause. 'If she was the person I thought she was as I looked at her,' her mother says, 'she was perfect.'
Justin 11 of 26
"Born on September 19, 2011, Justin passed away on December 16, 2011. His mother Shamika remembers him as 'sweet, peaceful, fun, very loving…and with such strength in those big beautiful eyes! He was a true Fighter!'"
Katherine 12 of 26
"Katherine was born on October 27, 2006, and passed away on February 17, 2007. She was the daughter of Jose and Dolores. Katherine suffered from a complex congenital disorder, yet she 'was very strong, she made us feel a lot of faith, a lot of love, and inspired us to believe in God forever,' her mother says. 'She was so beautiful—everybody fell in love with her. And because of her, we found friends and beautiful hearts.'"
Landon 13 of 26
"Landon was born on October 4, 2002. He is the son of Bob and Bethany and the brother of Chase, Sierra, and Anessia. Landon suffers from HLH and Lymphoma. His parents proudly point out that 'Landon has a big heart, and his love for life is strong. Everybody who knows him loves him.'"
Liat 14 of 26
"Liat, who died at five weeks of age on May 17, 2011, was preceded in death by an older sister, Eliana who lived from September 18, 2009, until February 21, 2010. Both little girls died of an unknown genetic syndrome that is likely recessive. 'Liat loved to be held,' her mother recalls. 'She was so cuddly and just felt so peaceful in our arms. She breathed more comfortably on her left side, and we made sure to always hold her that way. We cherish the time we had with Liat and are grateful that we were able to bring her home so that she could live her last days surrounded by the love of her family.'
Jaime and Paul are the loving parents of their angel daughters, Liat and Eliana. Although her parents miss Liat terribly, they derive some comfort from 'knowing that Liat is no longer suffering. She is up above with her sister Eliana, where they are taking care of each other.'"
Nicky 15 of 26
"Nicky was born on February 2, 1999, and passed away in April 2008. He suffered from severe aplastic anemia—a bone marrow failure disease. Nicky's mother describes him as 'silly and a sweetheart, caring, good-hearted, loving. What a great and amazing kid he is.'"
Olivia 16 of 26
"Little Olivia came into the world on September 27, 2012, and has struggled heroically ever since. She was born with an array of health challenges that includes, among other things, partial trisomy 4P, a severe sleep apnea, aspiration into her lungs whenever she eats, and hypertrophic cardiomyopathy. She will have cognitive and physical developmental delays of uncertain extent.
'Olivia is such a sweet, easygoing baby, such a gentle baby,' her mother says. 'She is also such a trouper, a fighter.' Her family fights just as hard for her. Watching the constant 'prodding' every day in the hospital, with needles, feeding tube, Continuous Positive Air Pressure (CPAP) machine, they resolved 'to provide her with the best quality of life and to make sure she is comfortable, to make sure she is never in any pain. We want to be able to include her in our family activities, to be able to be held by her sister and brother, to just be with her family.' Once that resolve was in place, they were able to bring Olivia home 'just before Christmas. It was a special Christmas for us, being able to be all together.'
Now, Olivia is gaining weight and growing, while being tube-fed. 'She is a real fighter!' her mother exclaims.
Reggie 17 of 26
"Little Reggie was born prematurely on January 27, 2011, at 24 weeks. He weighed 1.95 pounds at birth, and spent the first year of his life in the Mary Bridge Hospital neonatal and pediatric ICUs. He undergoes rigorous physical therapy and feeding therapy now. 'I love his smile,' his mother says. 'I love to see him dance and play with people. I love to see all the improvements he is making.'"
Ricky 18 of 26
"Ricky has three little brothers: William, Zech, and Noah. Born on March 9, 2000, he has been diagnosed with pheochronocytoma, a rare adrenal disease. His mother Renee says that Ricky never thinks about himself, his conditions, or his own needs. Instead, 'he is always so willing to help.'"
Rodolfo 19 of 26
"Born on August 2, 1998, Rodolfo succumbed to leukemia on September 29, 2012. 'Even when he was at his worst point, he never gave up, never complained, never showed fear,' his mother says. 'He was always happy, positive, and—more than anything else—very brave!'
One of Rodolfo's great joys in his life was the arrival of his little sister, Melissa. 'It brought so much happiness and change to his life. He loved his new baby sister, and always would put his cars and video games aside to enjoy her company.'"
Ryland 20 of 26
"Ryland was born on April 27, 200,8 and suffers from Bilateral Anopthalmia (he has no eyes), and Central Nervous System Disorder. His parents Lenette and Dave love his 'gentle, sweet and loving nature, and his infectious smile.'"
Skylar 21 of 26
"Skylar was born on April 4, 2005. He is the son of Keith and Sheila and the brother of Monica and Chandler, who are both 11 years old.
Skylar was growing and developing normally until he was nine months old, when he started to lose strength and control in his legs. Just before his first birthday, he was diagnosed with SMA Type II/III. Two weeks later, he came down with a severe case of flu and entered Children's Hospital in Seattle. He has remained there, on and off a ventilating machine until being fitted with a tracheotomy tube. His parents say he has 'been doing pretty well with it,' and look forward to the day when they can bring Skylar home. Through all of this 'busy and scary time,' his parents say, Skylar has received 'all kinds of prayers and good wishes from friends and family and even people we don't know.'"
Sophia 22 of 26
"Born on February 27, 2005, Sophia suffers from Rhapdomyosarcoma, a malignant tumor of the muscles that are attached to bone. Her mother most loves Sophia's 'sense of humor'—a playful instinct that has seen her through even the most stressful episodes in her convalescence. 'During her radiation treatment once, she even snuck a whoopee cushion into the treatment room to surprise her technician.'"
Sydney 23 of 26
"Sydney Beth was born April 27, 1994, and passed away February 1, 2006. She is survived by her parents, Brian and Maryann; and her sister, Margo. In January 2005, Sydney was diagnosed with a 'diffuse intrinsic brainstem glioma,' which is an aggressive, inoperable form of brain tumor. In March that same year, Sydney completed 31 radiation treatments and entered a simultaneous clinical trial with Iressa. In June, she left the clinical trail after extreme nausea and weight loss. Sydney maintained her weight without a feeding tube. However, in September, an MRI showed new tumor growth, and by early October Sydney started chemotherapy with chloretazine.
Sydney's parents described her as 'a creative 11-year-old who loved to do crafts. She enjoyed music and loved to sing, dance and act. Sydney was a very gregarious person. Even at such a young age, she had a unique ability to read people and empathize. She was quite witty and clever. She was great with young children and looked forward to being a babysitter. Sydney had always strived to be an independent person. She was an experienced camper and hiker, and prior to diagnosis she played soccer for six years, was an accomplished swimmer, and was just getting her feet wet playing water polo. She really enjoyed water sports!'"
Victor 24 of 26
"Victor was born a healthy boy on June 1, 2005. He is the son of Gary and Laura.
When he was two weeks old, Victor was admitted to Children's Hospital in Seattle, for twitching. Three days of tests could find nothing seriously wrong, so he was sent home. But at 12 weeks, Victor returned to Children's and was diagnosed with epilepsy. A month after that, Gary and Laura learned that Victor also suffers from West's Syndrome, a severe seizure disorder for which there is no known cure. In late 2005, Victor began steroid treatments that had a profound effect on his personality and ability to sleep.
'Victor's journey has taken us along many roller-coaster rides,' his mother says. 'We spent his first Christmas in the hospital for six days. He's already been admitted nine times. He has undergone many tests and many pokes, but he has regained his ability to smile and after months of not hearing him giggle, he now has a true guffaw!'
Because of his seizure disorder, Victor is developmentally delayed. But Gary and Laura would like to thank his teacher and therapists at the Boyer Children's Clinic, who are helping him progress. Although Victor cannot roll over, crawl, walk, or sit without help, he loves to move, and takes great pleasure in being swung in his hammock, bouncing on a ball with his mom, or being tossed in the air by his dad. 'While this journey with Victor has been heart-wrenching,' his mother and father say, 'we are so thankful to be his parents. Victor has proven an incredible amount of strength and zeal during his daily battles with seizures and constant medical tests. He is a feisty little-big guy with a mind of his own and the most beautiful smile and eyes. We look forward to seeing Victor live by his name and show us all how to be Victorious!'"
Willow 25 of 26
"Willow, one of three children in her family, was born on April 25, 2008, and required a heart transplant in her infancy. She suffers from post-transplant lymphoproliferative disorder. Her mother wants everyone to know about Willow's 'generosity and happy outgoing nature. I love her hugs and silly games.'"
Yeshva 26 of 26
"Born on December 3, 2008, Yeshva spent much of his life as a hospital patient. He had a heart attack when he was nine months old, with his heart stopping for 50 minutes. 'His doctors said that there was nothing more they could do, and that he would die,\' his mother writes, 'but God is the one who decides what happens and there is nothing that is impossible.' Yeshva revived, and underwent a heart transplant one month later. 'We stayed in Children's Hospital for eleven months and ten days.'
Yeshva's family—his mother and father, and siblings Mireya, Victor, Abraam, and Paola—loved 'to see his smile, to see him running, and everything he does. And he was very caring—when he says, 'Mama, I love you,' and gives me many hugs and kisses—it was so special.'"
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