Viera Charter School 4th graders pledge to help classmate deal with rare disease

BY ERNEST ARICO

For the 125 fourth graders at the Viera Charter School, learning about a rare and incurable disease can be a terrifying experience.

But when the students learned that one of their classmates suffers from the disease, the experience has a whole different meaning. Jenna Gathercole, a 9-year-old fourth grader at the school, suffers from an autoimmune disorder called alopecia.

Alopecia areata, also known as spot baldness, is characterized by the sudden appearance of round or oval patches of hair loss. The patches are slick or smooth, without scaling or broken hairs. About 25 percent of children also have pitting and ridging of the nails. While there is no cure for alopecia areata, treatment can control the disease in some children. However, there also is the possibility that the person suffering from alopecia will go completely bald.

According to dermatologists, a person can lose up to 100 hairs from their scalp every day. That’s normal, and in most people, those hairs can grow back. But many men and women, lose hair as they grow older. You can also lose your hair if you have certain diseases, such as thyroid problems, diabetes or lupus.

If you take certain medicines or have chemotherapy treatments for cancer, you also might lose your hair. Other causes of hair loss include stress, a low protein diet, family history or poor nutrition.

Doctors report that treatment for hair loss depends on the cause. In some cases, treating the underlying cause will correct the problem. Other treatments include medicines and hair restoration. In Jenna’s case, there is no cure, only treatments that can slow down the process.

“I don’t really remember when I first had it,” Jenna said. “But I’m dealing with it now. Having no hair is OK and I’m confident that it won’t get in my way or stop me from doing something I want to do.”

Karen Gathercole, Jenna’s mother, said her daughter was diagnosed with the disease when she was 3 years old.

“We’ve gone through three or four outbreaks since February 2018,” she explained. “The worst was in August 2018 when the loss of hair was very, very rapid.” Jenna’s dermatologist recommended steroid treatments to slow down the hair loss. So far, some of side effects from the treatment include excessive eating and trouble sleeping.

“Luckily she hasn’t suffered any mood swings or excessive weight,” Karen said. Boys have an easier time

adjusting to the disease because they can shave their heads and wear baseball caps, Karen explained. “With girls, it’s different. It hits their self esteem.”

One of Jenna’s biggest supporters is her 14-yearold sister, Ellie, a freshman at Viera High School. “She has been very protective of Jenna,” Karen said. “She keeps an eye on kids that may bully her.”

One of the issues that concerns Jenna, her parents, teachers and administrators is the bullying that can come with the stigma of being different — in this case suffering from an incurable disease that changes your appearance.

“A lot of people bully,” Jenna said. “It’s not OK to stand around and watch or do it yourself. Everyone has a story and sometimes they can’t control what is going on. What matters about people is what’s on the inside not on the outside. If you are someone who has been bullied or is being bullied, remember in your world or in your life the only opinion that matters is yours.”

To combat against those who might bully her or make fun of her disease, Jenna created a PowerPoint presentation to explain about alopecia and answer some questions she is frequently asked. During her Feb. 5 address to all the fourth graders in the Viera Charter School cafeteria, Jenna listed some of the frequent questions she is asked. They include:

• Does it hurt? No. I don’t feel a thing.

• When will you go bald? I don’t know when it will all go.

• What do I think? I think it is no big deal and that it will all be OK.

• Is it contagious? No, you cannot catch alopecia.

• Is there a cure? No. There is no cure because they do not know what causes it.

• Will I wear a wig? Not yet, but maybe if I go bald.

At the conclusion of her presentation, Jenna asked her classmates if they would sign a pledge supporting her.

The pledge says: “I pledge to support Jenna. If I see an opportunity, I will share information with anyone who is curious. If I hear negative talk, I will not be a bystander, instead I will speak up. I will encourage kindness among my peers, now, and in the future, for the remainder of our time in elementary school, when we get to middle school, when we get to high school, not just with my classmates but with other students in lower and higher grades.”

Carol Thomas, one of Jenna’s fourth-grade teachers, praised her student for her courage and fortitude. “She’s a super brave little girl,” she said. “As a student, she’s a leader. She befriends anybody. She is a very respectful student and never asks for any special treatment.”

Thomas said she is familiar with alopecia because she’s been around someone who had the disease and can relate to Jenna’s situation.

“I encourage her to keep speaking out,” she added. “I also want to make sure as she moves through her schooling that there are people who will come behind her and support her.”

Thomas admitted she hasn’t seen any students bully Jenna, but she knows it has happened, especially during recess.

“If she’s quieter than normal, then I know something is bothering her,” she said. “I will look for changes in her mood. When that happens, I let her meet with someone in the school’s guidance department.”

Thomas also said Jenna’s handling of her disease has educated her about students.

“I think I’ve learned as a teacher that we can allow kids to be leaders,” she concluded. “We can see remarkable things happen with our kids.”