Photography by Sammie D Photography
Meet Raegan. She is Beauty Revived.
I remember as a girl running through my neighborhood, barreling along without a care in the world. When I was still fearless, I pulled a trick on my bike and ended up skinning my knee, instantly bursting into tears. By the next day, the scrape was fading and the whole thing was but a memory.
Let me introduce you to a brilliant, courageous 7-year old who showed me just how tough little girls are.
Raegan is not your average girl who bounces back from scrapes and bruises because they heal quickly. She has Epidermolysis bullosa (EB), which is a group of rare diseases that cause the skin to blister. The blisters may appear in response to minor injury, heat, or friction from rubbing, scratching or adhesive tape. In severe cases, the blisters may occur inside the body, such as the lining of the mouth or intestines.
Reagan’s mom, Alissa, explained that when Raegan was 4 weeks old, she put socks on to go for a walk. When they got home, she had a blister that covered her entire foot and since then, she has never been without blisters.
Doctors told the family that she was one in 50,000 diagnosed with EB and one in 130 with her specific strand, but you’d never know it when you watch Raegan.
When I first met Raegan, we met at a park. Raegan ran up and down the playground equipment while Alissa and I sat talking. She had recently fallen when playing with friends so her hand was bandaged to cover an already formed blister. Within moments, she fell off the monkey bars and burst into tears after landing on her injured hand. Alissa and I watched Raegan run back to the same bars just minutes after falling. I was truly blown away by her strength and ability to bounce back from something that Alissa and I both said would have us crying and moping for hours.
Alissa said, “Raegan is a very positive girl, a lot of the time you can tell she is in a lot of pain but she wants to go play so bad. She insists on fighting the pain. When she needs to sit down and take it easy due to blisters all over her feet, she is still begging to go outside.”
Raegan faces many daily limitations like not being able to wear shoes most days due to blisters and her skin tearing so easy. If she has open wounds on her legs she cannot wear long pants due to the torn skin sticking to her pants nor can she go to a public swimming pool. Raegan cannot go outside until the evening time due to the heat and sun.
Her family recently moved from Alaska, where Alissa explained, the cold made life a little easier for Raegan. After hearing that, it only seemed fitting Raegan and her family go ice skating for their Beauty Revived session. She had never been, but the fear of falling did not keep her from having a blast. By the end of the afternoon, we had to drag Raegan away from the ice.
She is your typical older sister who enjoys coloring with her sisters, playing babies and going to the park. Her favorite thing to do right now is ride her bike.
“Like a lot of people, I whine just having one blister,” Alissa said. “But Raegan lives every day with blisters all over her body and doesn’t say a word. She is always wondering how everyone around her feels when you can tell she’s in pain. If you ask her how she feels, she reassures me with, ‘Mommy I’m fine, I love you.’ She’s my hero.”
One thing that truly sets Raegan apart is her kind heart. Raegan had a friend who had Leukemia. Raegan would push him in his wheelchair and they would read together. She would come home every night talking about her best friend. One morning Raegan wanted to wear a Captain America shirt because she thought it would cheer her friend up.
“Raegan sees the best in everyone,” Alissa said. “Raegan is only 7, but she is so aware of the world around her, and she has gotten to where now she is trying to hide her skin due to people staring. So many people are unaware and have never heard of EB or the impact it has on people’s lives like my daughters. She will never know the feeling of wearing shoes and there will always be pain if she falls down and gets that little scratch.”
When I look at Raegan, I see a child who is as strong as she is kind, who is as fearless as she is beautiful. Thank you Raegan, for showing me true beauty.
About the Photographer
Sammie D. is a photographer based on the Tennessee/Kentucky border who specializes in lifestyle, senior and couples portraits. As an active duty service member, she also enjoys photographing military homecomings for service member’s families. In her home, you’ll find dog hair is an accessory, pizza is a food group, rescue is her favorite breed and laughter cures every horrible-no good-very-bad day. She is married to her best friend, has an incredible son, three rambunctious dogs, an ornery cat and one dream horse.