Medical Photojournalism:

A Story of EB Skin Disease

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The Gates Center For Regenerative Medicine

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Medical photojournalism, like this assignment, gives me glimpses into a harsher reality of life and of parenting. When I walked into the home of Eileen and Chris Attar, the love and dedication for their sons was abundantly evident. Equally as evident is the degree of care required for a boy with a malady so severe that a full time nurse is employed.

The youngest in the Attar family, two-year-old Brady, was born with a genetic condition called Epidermolysis Bullosa. There is no cure for kids with “EB”. Bandages need to be changed almost daily. And with a life expectancy of just 20 or so years, every moment is doubly precious.

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When Brady was diagnosed with EB skin disease as a newborn infant, the world of Eileen and Chris took on a whole new reality. They soon realized that caring for a child with a major medical affliction is quite different than raising a healthier child. Yet initial despair can turn into hope as new advancements in medicine breathe exciting new possibilities. The Gates Center for Regenerative Medicine on the CU Anschutz Medical Campus in Colorado researches new ways to combat existing afflictions.

I’ve been working with The Gates Center for Regenerative Medicine for several years now and ever since the first assignment in 2015, I’ve come to understand the magnitude of research moving ahead, thanks to the brilliant minds and philanthropists at The Gates Center. These are some of the do-gooders of the 21st century. And what they’re accomplishing changes the world of medicine. During an assignment to photograph interns, I heard a stark revelation by guest lecturer CBS News correspondent Dr. Max Gomez. “In the near future, we’ll visit the pharmacy for a prescription of our own cells rather than drugs.” What this all means for little Brady and his family is immense. At The Gates Center, it is now possible to spray on new skin cells!

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In his article published last week in CU Anscutz News, medical writer Michael Booth wrote:

“EB is an inherited skin and soft-tissue disorder that causes blisters and peeled skin with even light touches. It also can create sores and scar tissue in the mouth, esophagus, lungs, muscles, eyes, nails and teeth. There are multiple forms of EB, and Brady has the most severe kind, dystrophic EB.”

“There is no current treatment or cure for EB, only attention to its symptoms. Research has focused on both external applications of materials that could restore skin cells, or injections of modified cells that might eventually override the patient’s damaged cells.”

Gates Center Director Dennis Roop is excited about new progress in research. Read Michael Booth’s poignant article:

“Spray-on delivery of new cells “has the potential to revolutionize treatment” for kids with EB, Roop said.”

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Cover of 2019 annual report for The Gates Center For Regenerative Medicine (Un cropped version).

A kiss from his father Chris while Brady’s bandages are being changed.

Family life during bandage changing for EB skin disease.

Brady walks with the help of with caregiver Kristina Byrne, RN,

Music therapy at home with big brother Leo.

Brady’s mom Eileen trims old skin from his foot.

Brady’s mom Eileen and brother Leo check inventory of bandage supplies.

Eileen Attar shows some of the steps needed to bathe her son Brady.

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As a photographer, I’m often invited to see the unveiled side of people’s lives. I feel it to be my responsibility to depict reality while simultaneously creating beauty.  Some assignments, like this one, simply have more impact on me than others. I think about my own son when he was just a year old, living with fibular hemimellia. Our anguish peaked as we prepared for his left leg to be amputated. At the old Children’s hospital in Denver, orthopedics shared a floor with children suffering brain trauma. There were kids who had fallen out of windows and others diagnosed with brain cancer. These kids would never live a life anywhere close to what could be called normal. Some would die before they could grow up.

It didn’t take long to realize that, although grisly, our problem wasn’t parallel to those with larger maladies. Little Brady, his parents and his big brother are on a tough road for sure. But boundless love and the hope of medical breakthroughs, help to calm each challenging hour. Of faith, hope and love, it is written that the greatest of these is love.