By Mark Guydish
Assume the largest organ in your body was on the fritz from birth. What do you think would be the most obvious problem?
“Her feet,” Amy Spinelli said when asked about her daughter’s ongoing struggle with epidermolysis bullosa. “Shopping for shoes used to be fun. With Ayla, it can be a difficult choice.”
That’s because the largest organ in the human body is the skin, and EB is a rare genetic disorder that leaves skin prone to blistering and tearing with little friction. And no matter how careful you are, there’s one part of the skin most likely to experience friction: the feet.
But while Ayla has grappled with a mild form of EB since birth, her entry into kindergarten at Wilkes-Barre Area School District’s Solomon/Plains Memorial this year exposed a second concern: Making and keeping new friends when you can’t always do what they do.
Despite a pronounced shyness regarding her disorder, Ayla agreed to be put into the kindergarten limelight recently, in the hopes of helping her fellow students understand that being a kid with EB doesn’t make her any less of a kid.
The class recently held an “EB Awareness week,” during which teacher Maria Unice arranged programs to help Ayla’s kindergarten mates appreciate her plight while looking beyond it. Ayla even offered small cards with a picture of her, right arm akimbo and smile beaming ear to ear, with the message “My name is Ayla and I have EB.
“I am not contagious, I was born with it, and there is no cure,” the note added. It went on to point out that, except for the disorder and some precautions it requires, “I’m like any other 5-year-old little girl; I love to run and play but many times my body will hurt if I do too much.”
Ayla has a mild form of the disorder. More severe cases can leave children pockmarked with blisters and scars, or wrapped in swaths of gauze. And, with skin that tears easily, putting an adhesive band-aid on a boo boo is a no-no.
In some cases, toes and fingers that repeatedly blister and mend can fuse. Membrane inside the body — the mouth, for example — can blister as well, making eating and breathing difficult.
On a recent morning, Unice reinforced the awareness message by reading Dennis Vanassa’s “Everyone Belongs,” about a boy named Ryan with EB noting he, like any other child, wants to play games and be a kid.
After the reading, Unice asked the class what sort of things they could do with children with EB.
“You can play patty-cake with them!” one girl suggested.
“You can go down the slide with them!” Riley Williams offered.
Then, after a few more comments by others, Riley piped up: “Miss Unice, when are we having snacks?”
Well, after all, that’s something you can share with EB children, too. But, as Ryan in the book noted, “Stay away from crunchy food, because soft is better.”