Biography
A Biography in Progress - By Monica Bennett Firchow, daughter of Gene W. Bennett
I have felt compelled by a strong prompting to write my father's biography for some time. I have been obedient to that prompting by becoming a bit of a sleuth in gathering information on a life that ended almost twenty years ago. I have a binder bulging with interviews, letters, newspaper clippings, and even published medical articles with my father as the case study. You see - my dad, Gene Bennett, had a very rare and complex disease. He suffered from a disorder called Congenital Eyrthropoietic Porphyria.
CEP causes its victims to be extremely photosensitive. Any area exposed to sunlight can result in severe phototoxic damage. Blisters form on the skin and burst, leaving open wounds that are vulnerable to secondary infections. These infections make it impossible for the skin to heal, thus causing massive scar tissue. In the worst cases, like Gene's, photomutilation occurs over a long period of time resulting in partial or total loss of fingers, earlobes, nose, and lips.
A Glimpse at Gene's Life
Gene was born in February of 1929 to Cyril and Carrie Bennett of San Francisco, California. From all outward appearances, baby Gene looked healthy and beautiful, but on the inside a porphyric storm was brewing. Gene's diapers were sometimes stained purple and he began to develop blisters on his hands and face. Because little was known about porphyria, doctors were not able to recognize the tell tale signs and diagnose him accordingly.
In the summer of 1930 Cyril and Carrie took Gene and his older brother Donald, loaded their belongings into a moving truck, left San Francisco and headed for the foothills of the Sierra Nevada Mountains. They made their home on a beautiful ranch that had been in Carrie's family for two generations. Life there was difficult but good.
Winters brought a refreshing reprieve to Gene from the blisters, but summers guaranteed their return. The sun was intense and the blisters on his little hands and face became more frequent and severe. After many visits to local doctors and faraway specialists, it was decided that little Gene should live in San Francisco where the sun was filtered by overcast days and where medical attention would be better.
Cyril and Carrie said goodbye to their little boy, then 5 years old, and sent him to live with Carrie's sister, Pauline Oneto who lived on 23rd and Dolores in the Mission District. From there he went to school - with hat and gloves on for protection from the sun's rays. He went to Children's Hospital two to three days a week for treatments for a "skin disease" doctors didn't fully understand.
He tried to grow up just like any other boy, but it was clear by junior high that he'd never be just like the other guys. Even with a hat and gloves, Gene's skin continued to blister, rupture and become infected. By high school his facial skin was taut with scar tissue, his lips were so thin they could barely be seen, and one of his ears had been surgically resected because of constant infection.
His teen years were spent studying at Mission High School. He took a photography class and the camera soon became his window to the world around him.
During high school, Gene also took an interest in flying. The "dark room boy" who was supposed to stay out of the sun found a way to get even closer to his nemesis. He joined the Civil Air Patrol, in the mid 1940's where he was able to hone his photography skills and learn another - how to fly.
After high school, Gene spent the next ten years photographing anything that brought in money - the Painted Ladies of San Francisco, car wrecks for newspapers and insurance companies, individual portraits, and wedding ceremonies, and eventually dog shows.
He opened two different studios - the first was on Valencia Street and the second was on Ocean Avenue. Gene named both shops Bennett Photography. One fixture that stood out in his studio was a beautiful Samoyed dog named Jigs. Both his photography and his Samoyed drew much attention. Soon the adoring attention of one particular young woman changed his life forever.
Barbara Larson was fascinated by Gene and all that interested him. She eventually worked in his studio where their affection for each other grew. To be sure, Barbara noticed Gene's disfigurement, but looked past that and into his sweet brown eyes and his endearing charm. They married the winter of her 18th birthday.
The newlyweds started a family right away and in five short years, their first five children were born. They quickly outgrew their home on Capital Ave. They moved north to Cotati. Barbara stayed home with the children and helped Gene with his photography business, St. Francis Studio. Soon there were two more children. He eventually moved his business to the garage of their home at the end of West Cotati Avenue.
Doing business as Bennett & Associates, Gene continued to take school pictures and family portraits, along with dog shows. Soon there were more dog shows and fewer portraits. Traveling became a way of life for Gene. He earned his pilot's license from the Sonoma County Airport and was soon following the American Kennel Club dog shows all over the western part of the states.
With seven children, Barbara managed to run the photography business from a make shift office in the garage, keep house, cook wonderful meals, bake cookies, sew, write articles for the local newspaper, and take care of a husband whose fingers were continuing to disappear and whose once handsome face was being relentlessly ravaged by the onslaught of wounds and scars caused by his porphyria.
In 1975 Gene's mother Carrie died, and Gene moved his family to the ranch in Jackson, California, which he had left 45 years earlier as a child. The family quickly and happily acclimated themselves to country life on Bennett Ranch. Gene's dreams pulled him outside everyday - planting, moving pipes, and harvesting whatever he could grow. He protected his face and head with a hood and his hands with a pair of old socks, but to no avail. His body was loosing its fight against the sun.
In the early 1980's Gene was connected with doctors at the University of California, Davis Medical Center where he was cared for and studied for almost ten years. His goal was to help doctors understand Congenital Eyrthropoietic Porphyria better. He endured many tests and many experimental treatments, but he always thought it was worth it.
It would have been simple for Gene to have lived his life in prescribed darkness and gain a few more years of life, but he preferred to live his life to its fullest. He was a professional photographer, a pilot, a rancher, and a husband and father - not bad for a sick little boy the doctors said wouldn't live past his twenties.
of Gene W. Bennett
About This Website
My name is Monica Bennett Firchow, I'm Gene and Barbara's middle daughter. I am writing my dad's biography and hope to have it finished and published by the summer of 2008. Thank you for visiting this website. Please feel free to email me at info@genebennett.net if you have any questions or comments. Check out www.porphyriafoundation.com for more information on Porphyria.
Website content by: Monica Bennett Firchow info@genebenett.com Ó 2007 genebennett.net
Webdesign by TechSis.net
Daniel Dismas Bennett
October 18, 1958 - September 16, 2007
Click to enlarge
