Makenzie Cadmus may be only 7 months old, but she and her supporters are knocking the socks off a rare genetic disorder.
Since her birth, Makenzie has been fighting epidermolysis bullosa, a condition that causes her skin to develop painful blisters with the slightest friction. She must wear bandages from her hands to her shoulders and from the waist down, with a thick layer of soothing ointment over her entire body.
The baby’s pictures, and the eye-catching socks she wears on her arms and legs over her bandages, have become a symbol for awareness of her condition in her Hauppauge community. Neighbors and friends have rallied around her, sharing photos of themselves wearing colorful socks on their hands and appearing in a video featuring an original song about Makenzie called “Rock the Socks.”
Makenzie’s parents suspected she had the disease soon after her birth, her mother, Liz Cadmus, 36, said.
“I’m a speech therapist and my husband is a school psychologist, and we remembered reading about it in textbooks, but you kind of glance over and don’t expect to run into it in your life,” she said.
About 200 babies a year are born with the condition, which has no cure, according to the Dystrophic Epidermolysis Bullosa Research Association of America.
On a bad day, Makenzie’s blisters might extend into her throat, making eating painful, and to her fingertips, requiring a layer of bandages for each individual finger.
Though the condition is genetic, Cadmus said no one in her or her husband’s family has skin issues, including Makenzie’s 5-year-old brother, Crosby.
Makenzie had a habit of throwing off her bandages at NewYork-Presbyterian Hospital/Columbia University Medical Center, causing more blisters, until a nurse recommended using socks to secure them, Cadmus said.
“Rock the Socks” has become Makenzie’s catchphrase and a rallying point on social media as the family and their supporters raise money for the baby’s treatment.
Cadmus said the family spends thousands of dollars a month on wound care, which includes supplies like soothing Aquaphor ointment and bandages, which are changed once a day on her legs and twice a day on her arms. Much of the treatment cost isn’t covered by insurance, she said.
The family is also saving donations in a trust for a bone-marrow transplant, which research suggests may help. They’ve raised nearly $20,000 so far through an online fundraiser, a small dent in the $200,000 needed for a transplant.
“It’s very expensive,” Cadmus said. “Once we have the ability to do it, we would consider it.”
Over the summer, Cadmus’ husband, Nick, reached out to Michael Fiore, a friend who works for local media company NuView Productions, about creating a video to educate others about Makenzie’s condition. He had seen Fiore’s signature montage videos, which include original music.
“He asked me if I would do one for him and after spending an hour on the phone with him, I was like, ‘Nick, it’s not a problem, we’ll do it for free,’ ” Fiore said.
The result was the upbeat song “Rock the Socks,” which NuView released in August. An accompanying video featuring hundreds of friends and family on the bleachers at Hauppauge High School, cheering to support Makenzie — with the song in the background — was released in September. It has more than 1,600 views on YouTube.
Soon after the song was released, dozens of photos began to appear on Facebook, Twitter and Instagram with the hashtag #rockthesocksmakenzie, with some posts originating as far as Florida.
The Hauppauge High School football team also hosted an event on Sept. 9, selling special blue socks to raise money for Makenzie’s medical care.
The Cadmus family, with help from their “Rock the Socks” group, is planning a “Socktoberfest” and a comedy show fundraiser in the months ahead.
In the meantime, Cadmus said they’re doing their best to make sure Makenzie feels loved. The family recently took a portrait of their little girl, wearing a ruffled dress they bought before her diagnosis, over her protective clothing.
“The amount of community support has just been a blessing,” Cadmus said. “She’s magnetic — anybody who meets her really wants to be part of her life.”