Tabitha Stemen carries colorful business cards with her with a picture of her son Ian’s smiling face on the front.
“Hi,” the card starts out. “Mommy gave you this card because you asked about me.”
The card provides information about the skin condition Ian was born with, Epidermolytic Ichthyosis (EI.) Tabitha passes them out to people who might have questions about why Ian’s skin is especially dry and thick.
She hopes that people who meet Ian walk away with information about the skin condition, but also a change in perspective and a bit more compassion.
“I might be a little different,” the card reads. “But I am a good, smart little boy who only wants to be loved and accepted.”
Ian, 5, loves to play and be on the move, despite the physical pain his condition causes.
People with EI have incredibly dry skin that is very fragile and sensitive.
“Any little bump can cause it to crack and tear,” Tabitha said.
He is at high risk for skin infections and is unable to sweat, so it is important for him to stay cool.
When Ian was born, his skin was so painful that he struggled with learning to sit up, crawl or walk.
When he was 1, Tabitha and her husband Kip got connected with the Licking County Board of Developmental Disabilities’ Early Intervention program and Developmental Specialist Diane Dodson began regular visits with the family.
She’s been a part of Ian’s support team ever since.
“She’s always been there for us,” Tabitha said. “She’s been so patient in finding other ways to do things. Typical things weren’t what worked for him.”
Diane helped the Stemens realize that Ian was having seizures. He was diagnosed with epilepsy as well as autism.
Ian doesn’t use many words to communicate and sometimes uses sign language. His LCBDD Service Coordinator worked with Tabitha and Kip to use Family Support Services funds to purchase him an iPad with the LAMP Words for Life application, so he would have another option to communicate what he wants.
Ian was comfortable using the device right away.
“He learns so quickly, he will see something once and he’ll remember,” she said.
He especially likes to ask for his favorite treats and name his favorite animals.
Ian has two older brothers, Eric, 8, and Trevor, 6. He enjoys attending school at Flying Colors Public Preschool and will start kindergarten at Licking Valley Primary in the fall.
His parents are hoping he will continue to use more words to communicate while also using sign language and his iPad.
There is no cure for his skin condition, but Ian’s family members do what they can to raise awareness of EI and advocate for more research.
For more information and to learn how to support current research, visit firstskinfoundation.org.