Parents

Parents of baby with rare skin condition ask for help celebrating her birthday

As Makenzie Cadmus nears her first birthday, her parents are asking for help celebrating their daughter's life and bringing awareness to her painful skin disease.

Makenzie was born with epidermolysis bullosa (EB,) a skin condition that causes severe blistering and sloughing of the skin. Children with EB are frequently referred to as "butterfly children" because their skin is fragile and tears as easily as the wings of a butterfly.

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These parents are raising awareness for their baby's rare skin condition

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These parents are raising awareness for their baby's rare skin condition

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"I'll never forget the gasps when she was born — the inhale of everyone's breath when they saw that she was missing her skin," her mother, Liz Cadmus, told TODAY Parents. "You could see blood vessels. You could see down to the bone."

She said the first few months of Makenzie's life were "a very dark time" for she and her husband, Nicholas, as they struggled to care for their sweet daughter's painful condition. But today, the family has hope thanks to experimental medical treatments and the support of their communities — both in real life and online.

"She is missing both keratin and collagen, and essentially those are like the fibrous glue that holds the layers of skin together," Cadmus continued. "Learning to take care of Makenzie was a journey — there is no cure for EB, so it's basically wound care. Nurses had to teach us how to take care of her."

Liz Cadmus
The Cadmus family is looking into an experimental bone marrow transplant procedure that may give Makenzie a chance at fighting the disease.

It took several months for Makenzie to come home from the hospital, and learning to care for her blistered, torn skin was a challenge for her parents. Many bandages fell off, leaving her skin even further damaged from excessive bandage changes. When a nurse suggested holding her bandages in place with socks, Cadmus was eager to try something new.

RELATED: Healing the 'butterfly children': Treatment offers hope for rare skin disease

"I went to Walmart and bought lots of socks — I figured I'd keep trying different types until I found something that worked for Makenzie," said Cadmus. "We found socks that worked, and as soon as she was able to switch to twice daily bandage changes instead of bandage changes every few hours, she started to heal."

Liz Cadmus
The Cadmus family: Nicholas, Liz, Crosby, 5, and Makenzie, 11 months.

Nicholas Cadmus wrote a poem about his daughter "rocking the socks," and soon after realized he had found a way to bring members of the EB community together and raise awareness about the disease.

The family held a "Rock the Socks" celebration in their community, and worked with a video production company to create a music video that elaborated on their Makenzie-inspired poem. They also started a Rock The Socks Facebook page, where they share updates on Makenzie's condition and work to spread awareness about the condition.

"Social media has become a big part of our life because it's such a rare disease and that's the only way to really communicate with other people who are going through what you're going through," said Cadmus.

Through their online EB communities, the Cadmus family learned of an experimental bone marrow transplant that offers hope for their daughter.

"We want to get it for her — we want her to have that chance as soon as possible so she really has the best chance possible for the best life she can possibly have," said Cadmus, adding that individuals with Makenzie's form of EB rarely live past the age of 30. Recently, they started a GoFundMe account to raise money for the treatment.

Liz Cadmus
Cadmus says, despite her daughter's painful condition, she is a happy baby who is always smiling.

As Makenzie nears her first birthday on February 22, the family has taken their Rock the Socks campaign to a new level, asking the public to post photos of themselves — rocking their own socks — to social media on that day with the hashtag #RTS1000.

"Our goal is to get 1,000 individuals to post on her birthday to raise awareness," Cadmus explained. "EB is known as the worst disease you've never heard of, and these posts can help bring about awareness."

RELATED: 'Everyone loves him': Family adopts abandoned 'butterfly baby'

In the meantime, Cadmus says her daughter is a strong, happy child who enjoys walks outside and is always smiling, despite being in constant pain.

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"She's amazing. She's so strong. She is such a fighter," said Cadmus. "Nothing really stops her...as long as she's bandaged and protected, you wouldn't know she has this horrific disease."

Liz Cadmus
Makenzie Cadmus was born with epidermolysis bullosa, a condition that causes blistering and sloughing of the skin.
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