Boy with alopecia helps to educate other children

OKEECHOBEE — All I can say about this young boy, John Immerfall, is just you wait and see what this child does to change the world! I had the pleasure of meeting John and his mother to talk about why he looks different. With the release of the motion picture “Wonder,” which talks about the challenges a child who looks very different from his peers faces when attending school for the first time, it brought to mind John’s story. While the main character in Wonder suffers from Treacher-Collins Syndrome which causes facial deformities, John has alopecia, which is hair loss for a variety of reasons.

Nine-year-old John Immerfall has alopecia, which is hair loss for a variety of reasons.

John, who is a 9-year-old third grader, is new to Okeechobee.

His family moved here when he was in second grade, as his mother obtained employment in Okeechobee. Coming from Indiana, via a brief time in Alabama, John was used to the looks and stares due to his condition. Although he has a great attitude, he says that sometimes it gets to be a bit stressful answering the never-ending question, “Hey, why are you bald?”

John responds, “Technically I’m not bald until I have NO hair on my head!” Beginning at the age of two, John’s hair started to fall out for no apparent reason. He was later diagnosed with alopecia due to an auto immune disease. Mom Stephanie explained it to him like this: “She told me that my body is allergic to my hair.”

John recalls having hair this past summer, but again it started to fall out, so of course the looks and questions began again.

John says that his most difficult times have been on the bus rides to and from school, as kids just say unkind things sometimes. Mom Stephanie says that the school staff has been wonderfully supportive of John.

He and his mom decided to bring awareness to our community. This past September they opened a lemonade stand during Alopecia Awareness month in front of Stafford’s salon. Their hope was to raise awareness about his condition. They also hosted a lemonade stand at the Touch a Truck event at the Okeechobee Agri-Civic Center in November.

Using the proceeds from the lemonade stand, John and his mother Stephanie were able to purchase a variety of children’s books addressing alopecia. Thus far they have shared the books with John’s home school, South Elementary and at Central Elementary School, where John was invited to speak over the intercom to tell students about alopecia.

To date John and his mom have purchased enough books to provide a set for each media center at all Okeechobee Elementary schools as well as the public library, which they will be doing soon. Additionally, John befriended Jack Nash at the sheriff’s office, and John plans to provide books to the sheriff’s office for their staff to use when reading to students here in Okeechobee.

When John is at home, he loves to play video games and I was educated all about Slime Rancher — his favorite game! He is thinking about writing a children’s book about his journey through alopecia, and of course we had to talk about all the possible themes of the book.

John and his mom have developed a Facebook page: NO HAIR, DON’T CARE, which you can like to follow John on his journey to tell us more about Alopecia. Thanks for inspiring us this week John.

 

Leah Suarez is a freelance writer.

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