Hundreds of people helped a Hauppauge baby with a rare genetic disorder celebrate her first birthday Wednesday.
Makenzie Cadmus was born with epidermolysis bullosa, a condition that causes her skin to develop painful blisters with the slightest friction. To protect her delicate skin, she must wear bandages from her hands to her shoulders and from the waist down, as well as socks on her arms and legs to stop her from removing the bandages.
For her birthday on Wednesday, Makenzie’s family started the “Rock the Socks 1,000” campaign. The goal was to get 1,000 people to posts photos of themselves wearing socks on their hands using the hashtag #RTS1000 to help raise awareness for epidermolysis bullosa.
By 8 p.m., the family had surpassed the goal. Nearly 2,000 people had participated on Facebook, Twitter and Instagram, said Liz Cadmus, Makenzie’s mother.
Cadmus said the “Rock the Socks” contributors included singer Debbie Gibson and New York Islanders John Tavares and Johnny Boychuk.
“It’s been just incredible to see everyone posting pictures,” Cadmus, 36, said. “We really wanted to celebrate this day and we’re all looking forward to a brighter chapter in her life.”
About 200 babies a year are born with the condition, which has no cure, according to the Dystrophic Epidermolysis Bullosa Research Association of America. The life expectancy for people with Makenzie’s form of the disorder, called recessive dystrophic epidermolysis bullosa, is currently 30 years, Cadmus said.
On a bad day, Makenzie’s blisters might extend into her throat, making eating painful, and to her fingers and toes, requiring a layer of bandages for each individual digit. The painful blisters can sometimes cause digits to fuse together, Cadmus said. Already the big toe on Makenzie’s right foot has fused with the toe next to it.
But Cadmus said she hopes Makenzie will experience improvements. Though the disorder makes it difficult for Makenzie to crawl, she is slowly learning to walk and is steadily gaining weight, Cadmus said.
“She couldn’t even sit up three months ago,” Cadmus said. “Now she’s walking around and exploring her environment like a typical kid. It’s really heartwarming to see that despite everything she’s gone through she’s still hitting her milestones.”
The family has hosted several fundraising events to raise money for wound care expenses, which according to Cadmus costs thousands of dollars a month.
Two more fundraisers are planned for March. There will be a raffle at That Meetball Place in Patchogue on March 8, and a “Rock the Socks” event will be held March 24 at Hauppauge High School.
With Laura Blasey