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Molly Gibbons

(Provided photo)

Molly Gibbons, an eighth-grader at Jamesville-DeWitt Middle School, didn't want to be known as the girl with EB, a rare skin disorder called epidermolysis bullosa.

Instead, she wanted to be known as Molly Gibbons, a typical 13-year-old who was just like many of her peers, said her mother, Tracie Gibbons.

Today the J-D community is mourning the loss of Molly, who died Sunday morning in her sleep, her mother said. She had last been in school on Thursday.

"It was unexpected,'' her mother said. "She passed in her sleep. Her body was just very tired."

Molly was born with a version of the same rare genetic skin disorder as Baby Easton Friedel, whose struggle with epidermolysis bullosa has been chronicled in the media and on his Facebook page.

Molly had the Recessive Dystrophic form of EB (RDEB), a form that invariably worsens with age.

EB, which affects an estimated one in every 50,000 births, is, a painful and incurable condition in which the skin is raw and blistered or missing entirely in areas.

An overflow crowd is expected at Molly's calling hours are from 4 to 7 p.m. today at Traub Funeral Home, Bridgeport. Services will be 10 a.m Wednesday at the funeral home.

Her mother said Molly loved art and poetry, and was an avid YouTube follower. She followed the Shaytards, known as the first family of YouTube, and eagerly awaited their new posts.

The Make-A-Wish Foundation granted Molly's wish last summer - to travel to California to meet the Shaytards.

"She said that was the best time of her life,'' Tracie Gibbons said. "It was a dream come true for her."

Molly loved watching YouTube videos - she loved Nerdy Nummies, a YouTube cooking show; and many others.

"It was what she did to escape from the pain,'' her mom said.

Although difficult for her, Molly attended school three days a week, taking English, math and art, her mom said.

Wendy Newman, her sixth-grade teacher and close friend, said Molly had a "snarky" adult sense of humor and found laughter in everything.

"Molly was a beautiful person who exceeded all academic expectations because she was such a determined girl,'' Newman said. "She and I would banter back and forth, and she would leave me funny messages on Post-its which she'd hide in my stuff.

Ever year, the school would host an EB awareness week. One year her classmates raised money for Debra.org, which researches EB. Another year they raised money to give gifts for kids with EB whose families can't afford gifts because of the high cost of treatment.

Bandages can cost $5,000 a month to protect the skin, Tracie Gibbons said.

"Molly would help me put together a presentation and find video clips I could use,'' Newman said. "She wanted the kids to know she was just like them.

"Her skin may have been fragile, but she was not,'' Newman said. "I will miss her wit, and her determination. And I will miss hugging her."