Where We Live: In Daisy’s Eyes
Look around you every day and you can find a hero.
Mine is my neighbor Daisy Sherman, who was born with epidermolysis bullosa. You’ll see an article in the front section of the paper about the disease known as EB today.
But this teen will tell you she’s more than the disease “where her skin peels off easily.”
She tells friends who don’t know how to approach her that she is missing the glue that bonds her skin. That’s simplifying it.
Daisy needs to wear bandages on her chest, her arms, her legs, her feet. The bandages that protect her wounds from infection take a full four hours to change and are painful. Her hands blister when she plays basketball or just touches things sometimes. She doesn’t have fingerprints. Because of the wounds, she is at risk for skin cancer.
Her shoulder blades can pop out of place.
But next week she’ll turn 14 and she tells her friends, “Don’t treat me any different. I want to be treated as a normal kid.”
Her life has been anything but normal from the day she was born without skin on her leg and bearing blisters on her body.
Daisy says people are sometimes afraid to come near her because they’ll catch what she has.
Once they talk to her, they’ll learn who she is. “When people to talk to me, they’ll say, ‘Oh you’re different than I thought.’ If I get one friend, they’ll vouch for me,” she said.
When people talk to her, they see her beautiful bright eyes. They see she’s a fun teenager who likes music, is lightning fast at stacking cups and can solve a Rubik’s Cube in seconds flat. The activities started as a way for Daisy to get therapy for her hands as she has hyperlaxity in her joints, which means that they stretch farther than normal.
But she certainly excels at it. She can’t be competitive against other people so she competes against the clock.
I asked if she holds any world records because she’s so good - nope, but she holds the record for inspiration.
As a teen, she misses the interaction in class. She has to stay virtual until COVID-19 dies down as she is allergic to most medicines.
She misses her friends and can’t wait to relax in the TV room downstairs with them when it’s safe again. For now, she video chats with them.
Daisy plays Minecraft and enjoys cooking. She bakes cakes and makes steak and chicken on the grill with her own barbecue sauce. Her hope is to go to Monroe Career & Technical Institute to study culinary arts.
She has to have a nurse with her when she is in school. Sometimes she has trouble breathing. Sometimes she needs help with her clothes because they could cause blisters on her skin.
With her blistered hands she can’t turn a jar lid or a doorknob.
But she’d love to skateboard and play her favorite songs on the guitar. She likes “Smoke on the Water” by Deep Purple, a throwback to when I was a teenager. And “Teenagers” by My Chemical Romance, which shows her alternative rock side.
I wouldn’t put anything out of reach. For guitar she can get finger protectors, but there’s no doubt that touching anything is tough.
She wants to have a normal teenage bedroom that doesn’t have a table for bandages.
Daisy’s mom, Dana, said she realized when Daisy was 2 that something was wrong. She’d see her wounds and panicked because she didn’t know what caused them.
Daisy knows that her brother Daniel, 11, worries about her. “I used to be jealous of my brother because he could do things I couldn’t,” Daisy says.
When she testified at a Food and Drug Administration hearing in Washington, she said she wouldn’t drive or go to the prom.
Age 13 has been a milestone for the girl who doctors thought wouldn’t make it through that first night. She’s talking about the prom.
But a typical teen, she insists she won’t wear a dress.