Garrett: The Boy Beneath The Bandages — André J. Hermann Photography

Garrett: The Boy Beneath The Bandages

This photo essay delves into the three-year journey of a 12-year-old boy and his family as they grapple with the relentless challenges posed by a debilitating disease. Epidermolysis Bullosa (EB), a rare genetic skin disorder, becomes the focal point of their daily lives.

This horrible condition arises from the absence of Collagen-7 protein, the glue that binds our skin's layers, rendering even the gentlest touch or friction a catalyst for painful blistering and skin deterioration. In these powerful images, my intention is to forge a profound connection between the viewer and Garrett, in the hope of generating awareness. Through Garrett’s narrative, I hope to humanize and shed light on this little-known and insidious disease, placing a face to the struggles and triumphs that define life with EB.

Lorraine Spaulding, pulls Garrett across the hot sand in a stroller to meet the rest of his class during a class field trip to the beach. Lorraine admits that ther life changed drastically after having Garrett who was born with Epidermolysis Bullosa. "Going places and doing things became a little more challenging."

Garrett Spaulding, 12, floats on his back in the jaccuzi for a bandage soak, appearing to be lost in a thought. With no cure available, his future is unclear. At 12 years old he has nearly reached half his life span. Most children with his form of EB don't live past their late 20s.

A very rare moment, one morning during a school holiday, Garrett felt surprisingly good enough to go out and play ball in the street with his brother. His mom had to add extra layers of bandaging to his fingers so he could handle the rough basketball without causing too much damage to the skin. Garrett and David played on the street for 10 minutes causing extreme blistering on the bottom of his feet.

Born with Epidernolysis Bullosa, Garrett Spaulding's skin is very sensitive and is hurt easily. But, leave it to his older brother, David, to find a way to tickle and rough house with his younger brother without hurting him. (Credit Image: Andre J. Hermann/ZUMA Press)

Garrett Spaulding, 12, born with Epidermolysis Bullosa, misses school on a regular basis due to doctor appointments, and episodes of pain. Hecontinues to do his homework and stay up to speed with his class.

Garrett is extremely afraid of bath tubs. His mom can't explain it. He prefers to soak his bandages and be bathed outside in the family jacuzzi. In order for his mom to do this without causing infection, she must monitor the chlorine levels in the water daily.

Garrett Spaulding, 12, born with Epidermolysis Bullosa, has always relied heavily on his mom to change his bandages. Recently he has begun to attempt changing his own bandages under his mom's supervision.

Garrett Spaulding, 12, holds on tightly to the side of the bathtub during a bandage soak. The jacuzzi is not working where he normally soaks so he must sit in the tub. Garrett is extremely afraid of the bathtub. Lorraine, his mom explains. (Credit Image: Andre J. Hermann/ZUMA Press)

Garrett Spaulding, 12, born with Epidermolysis watchesfrom his wheel chair as his brother David flies a kite on a windy afternoon. Garrett doesn’t have the strength to control the kite himself in a strong wind, nor does he like the feel of it in his hands. (Credit Image: Andre J. Hermann/ZUMA Press)

During a routine visit to the clinic, Garrett's mom leaves him alone for a moment to speak with a nurse. Garrett isn't particularly happy to be there. These doctor visits are extremely tiring for Garrett and his mom. During this visit they will spend over 12 hours at the hospital, be seen by 6 doctors, and receive an iron infusion via I.V. followed by a 2-hour drive home.

Garrett Spaulding, 12, holds a very uncomfortable position while his mom changes the bandges around his shoulders. Born with Epidermolysis Bullosa, Garrett must have his bandages changed up to 3-times per week.

During a quick stop to the grocery store, lacking the time to break out the wheel chair or stroller, Lorraine puts Garrett into the shopping cart and makes her way quickly through the store. After having Garrett she has had to change the way she does things, and admits that often there isn’t enough time in one day.