'Superhero' Baby Defies Odds As She Celebrates First Birthday

LEDYARD, CT — Jodie Dunn envisions there will be lots of tears shed during her great niece's first birthday party, as she gathers with friends and family to celebrate a day they feared might not come.

“We didn’t want to start planning her birthday, because with [epidermolysis bullosa (EB)] you don’t look past today," Dunn said. "We didn’t admit it to ourselves, but we really didn’t expect to celebrate her first birthday."

For those who don't know Avery Silva, she was born on June 1, 2017, and was shortly after diagnosed with EB, a rare genetic skin and connective tissue disease that affects one out of 20,000 births in the United States, according to the Dystrophic Epidermolysis Bullosa Research Association (debra) of America.

See also: Parents Can't Hold Baby For Fear Her Skin Will Come Off

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As one of the few children born with EB, Avery has extremely fragile skin that blisters and tears from minor friction or trauma. There is no cure, and serious forms of EB have a very high death rate.

Children with this disease are often called "butterfly babies" due to their skin being as fragile as butterfly wings.

“We’re just so blessed that she has come this far and is doing as well as she is," Dunn said. “She’s absolutely amazing. We didn’t expect this day to come.”

According to Dunn, her great niece has been doing very well "under the circumstances of what she has" since she last spoke with Patch in October. While Avery has been hospitalized a few times for stomach issues, her breathing has improved and she is very alert to her surroundings.

"We call her ‘Nosy Rosey’ because she doesn’t miss a trick," Dunn said. "She knows what everyone is doing and where everybody is at every single minute.”

Little Avery still needs to be wrapped in bandages to prevent her from damaging her skin, and she still gets blisters and wounds, however Dunn said they are not as bad as they were before due to the steroids Avery takes.

Right now she is the size of a three-month-old rather than a one-year-old. She still can't crawl or lift herself up.

Looking at Avery's brightly smiling face as she sits in her soft pink blanket-lined seat, you'd never know all she has struggled with over the past year.

“This little girl never cries...she has every right not to be happy, but she just takes it all in stride with a smile on her face," Dunn said. “There’s nothing about EB that’s easy, but Avery makes it look tremendously easy.”

Avery is not the only one smiling. Her family is overjoyed with the strength little Avery has made, a big reason her birthday is expected to elicit such strong emotions.

“Now that her birthday is here and she’s doing so well, we are just overwhelmed with joy," Dunn said. "She is just a strong, strong little girl and she is proving to the world that she has got the will of a superhero in a little tiny body.”

The party will be an outdoor cookout held at the home of Avery's mom, Kristin Silva, on June 2, and is planned to be a big celebration with lots of guests. They also plan to release a bundle of butterflies into the air during the party in honor of their strong little butterfly baby.

“I envision lots of tears of joy and happiness, something amazing, almost like Christmas," Dunn said. "I mean, Avery won’t know about it, it’s more for us than for her, but it’s just amazing. None of us thought this day would come. We weren’t planning for her funeral, but it is why we waited until this point in time to actually plan a birthday party.”

Instead of gifts for Avery, Dunn said people are invited to send gifts to Yale-New Haven Hospital, where "there's always children that need stuff and don’t necessarily have it.” Those interested can either send one of these items to the hospital's Child Life Department or call the Child Life Program at 203-688-2334.

If anyone wishes to send Avery a birthday gift however, Dunn said she does have an Amazon wish list.

“It’s going to be a very emotional day," Dunn said. "There were days that went by and we thought she wasn't going to see tomorrow, but Avery is not finished. There’s a purpose for her here, and she’s not going out without a fight."

Those who wish to stay updated on Avery's journey can follow her Facebook page, and anyone who wishes to "Help Avery May Silva Fight EB" can donate to the family's GoFundMe page.

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Photo credits: Jodie Dunn GoFundMe is a Patch Partner.