Makenzie Cadmus is about to turn one and her parents would like some help celebrating her birthday.
The youngster was born with a rare skin condition called epidermolysis bullosa (EB), which causes severe blistering and sloughing of the skin. Children with EB are sometimes referred to as butterfly children because their skin is so fragile it is comparable to the wings of a butterfly.
Makenzie's skin condition was immediately apparent at her birth. Speaking to TODAY parents, Makenzie's mum, Liz Cadmus says that she will never forget the moment her daughter was born.
"I'll never forget the gasps…the inhale of everyone's breath when they saw that she was missing her skin. You could see blood vessels. You could see down to the bone," she recalls.
Looking back, Liz says that the first few months of Makenzie's life were a very dark time for her and her husband, Nicholas. But, thanks to experimental medical treatments and the support of online and 'real life' communities the family now has hope for the future.
"She is missing both keratin and collagen, and essentially those are like the fibrous glue that holds the layers of skin together," says Liz.
"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."
One of the challenges in the early days was that Makenzie's bandages kept falling off, which left her skin even more damaged. A nurse at the hospital suggested holding the bandages in place with socks – and Liz, desperate to find a solution was keen to give it a go.
"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.
"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."
Socks made such a huge difference to Makenzie that her dad decided to write a song about their experience to help spread the word in the EB community. The family have also made a "rock the socks' music video to help raise awareness about the condition.
To celebrate Makenzie's birthday on 22 February the family want 1000 people to "rock the socks" by posting a selfie of themselves with socks on their hands along with the hashtag #rockthesocks.