Beyond her skin: 11-year-old girl does not let disease define her

Molly Gibbons is not your ordinary fifth grader. She is intuitive, sarcastic, and if she thinks you are worth it, she will let you into her life.

The 11-year-old Jamesville girl has a personality bigger than her body will allow, a demeanor fit for someone 30 years her senior, and she's got the world eating out of the palm of her hand.

Photo: Samantha Okazaki

Molly has no fear; she has no time for it.

"She fights through the pain," Molly's mom, Tracie, said. "When everything else could be going so bad, she's the one laughing and smiling and loving life. It's really amazing."

"I think that's the one good thing our necessary evil has taught us," Tracie added.

The "necessary evil" is the one part of Molly's life that both mother and daughter wish could be taken away. But now both couldn't imagine the young girl's life without.

Molly has dystrophic epidermolysis bullosa, also known as EB, a rare genetic disease that causes her skin to blister and split at the slightest friction.

"It's like grass, and grass has roots, right?" Molly said. "Well, my skin just doesn't have the roots."

The roots, in this case, is the type VII collagen protein that Molly lacks. Her skin is delicate, and because of that, her face, neck, arms, back, and legs are covered in sores, each one a testament to her strengths and struggles.

Her fingers are slowly fusing into a tight fist because the cuts cause a buildup of scar tissue, though Tracie meticulously bandages and wraps them to maintain their shape.

As Molly's primary nurse and caretaker, Tracie spends roughly $4,000 a month on bandages and creams to protect Molly's skin, and she dedicates most of her time to the medical upkeep for her daughter.

The disease has attacked internally as well. Molly's organs are slowly starting to deteriorate as they build up scar tissue, and her throat is growing increasingly smaller as she ages. For this reason, many children with EB opt to have a feeding tube inserted in order to get the appropriate medicines and nutrients.

There are four main forms of epidermolysis bullosa: simplex, junctional, dystrophic and the incredibly rare Kindler syndrome. All share similar symptoms, but the symptoms range in severity.

According to the National Epidermolysis Bullosa Registry, EB occurs in an estimated 20 newborns per 1 million births in the United States alone. There are no known cures for any form of EB.

"They said we probably wouldn't get to bring her home from the hospital," Tracie said as tears welled in her eyes. "But she's a fighter. Always has been, and always will be, which won't be so fun when she hits her teenage years."

The way Molly puts it, EB is more itchy than painful. Cuts will heal, but if scratched, they will reopen and inflame. It is an agonizing cycle.

People affected by epidermoysis bullosa are commonly referred to as "butterfly children" because their skin is as fragile as a butterfly's wings. Everyday activities such as riding in a car or brushing teeth can be immensely painful for someone with EB.

"The beach is the worst," Molly said with a look of fear. "I feel bad because I can't always do the things that my sister wants to do. And I think she gets mad at me because I can't go in the sand."
Molly's skin condition is an obstacle that her whole family faces together -- including her 12-year-old sister Lily.

"Lots of times people think that Molly's a burn victim," Lily said. "They stare at us when we go out to the mall or the zoo or somewhere. And they ask if she's contagious."

If there's one thing Molly can attest to, it is that there is nothing worse than feeling uncomfortable in your own skin.

"Except for maybe middle school," Molly said in dry tone, a testament that humor helps in her fight.

Molly is tough; she has to be. She refuses to let herself be defined by her skin. After all, beauty is only skin deep.

"She doesn't let anything stop her," Tracie said."And she knows how to charm a room. So she always gets what she wants some way or another, which you gotta admire.

"She's got this zest for life that I just can't explain."