SOUTH DAYTON – It may be typical that a 13-year-old boy would shave his head, but it’s more unusual when a 13-year-old girl shaves hers.
Samantha Rettig, an eighth grader at Pine Valley Central School, shaved her head recently to raise awareness of a genetic disorder found in her family. Rettig, participated in Bald for Bucks after she had decided to shave her head. She had known for about a month prior that she wanted to shave her head.
“I wanted to (shave my head) before, but I just didn’t know how to do it or where to go. I just thought it was really good to do it there,” Rettig said with a smile. “I really thought it was a great cause. My hair is not my life. I just thought why not.”
Rettig suffers from a rare genetic disorder and was diagnosed when she was 3 months old with Long QT Syndrome. This genetic disorder creates an electrical disturbance in the heart. She was diagnosed following an EKG and has to take medication daily. To be diagnosed, her mother, Jennifer Astry, said in the past a bell curve was used to see if the heart’s electrical patterns were abnormal. She said there was no definitive answer.
With Rettig’s younger sister, Kaylee, the gene mutation was found for the family so now future generations will have a definitive answer if they have Long QT Syndrome.
Rettig along with her mother and aunt, Aimee Bender all suffer from the condition in the family which also affects other members in the family. Astry and Bender’s brother Chad died from the disease when he was Rettig’s age.
“It’s a genetic disorder. There’s no cure for it. There’s really nothing that can be done. Medicine helps regulate it and then with a modified lifestyle (it can be controlled),” Astry said.
Bender said the disease is usually found in a family after a younger member unfortunately dies from the condition.
“That’s how it is found in a family, is someone dies from it. It is usually a child,” Bender added. “The worse time for this condition is adolescence and teenagers. As you get older, it seems to get better. Although (myself and Astry) have the internal protection, it seems like the younger kids are at risk and that’s the scary thing as moms.”
By participating in Bald for Bucks, Rettig was able to raise over $400. The entire school raised over $6,000 through the event. Rettig raised her money through family and friends, but also set up a donation table at a local supermarket to help her fund raising.
Rettig was able to get her two close female friends to also go bald with her. Astry said during the event, there were more female students getting their heads shaved than male students. Rettig recalled asking one of her friends to go bald with her.
“I remember I was in first period with one of my friends. I turned around to her and said, ‘I think I am going to shave my head for Bald for Bucks. I think you should do it too.’ She said ‘OK.’ I said, ‘Really, no thoughts?’ She said ‘No, my hair always gets in my face anyways,'” she recalled.
Rettig said she was excited to shave off her shoulder length hair the day of the event. She said her friend, Jessica who was shaving her head was starting to get a bit anxious and nervous prior to the event. Rettig was in the second group to shave her head and she said other students were in the crowd cheering her and other students on as they got their heads shaved or their hair cut. Students were holding up signs of encouragement and gave hugs following the hair cut.
“I was a little anxious. Just sitting there in front of the whole school made me more nervous,” Rettig said. “A lot of people would come up (after) and hug me and started petting my head. We took a lot of pictures.”
Rettig said she was thankful the event occurred in the Spring and not in winter. Astry joked she will save some money on shampoo.
“I like it short. A lot of people say I look good,” Rettig said.
Due to her condition, Rettig cannot participate fully in gym class, cannot play most sports or ride roller coasters. She also must keep her stress level down and is required to carry a defibrillator for her own safety. If the electrical problem starts to go awry, there is not much that can be done and symptoms include dizziness and even collapsing.
“Normal 13-year-olds have cell phones, chapstick, eyeliner in their purses, and Sam’s got a defibrillator,” Astry said.
Rettig has been carrying an external defibrillator since elementary school and carries it around in her purse. She said her friends at school are understanding about her condition, sometimes even joking about the weight of her purse. Rettig said being a student in a smaller school is helpful, since most students know about her condition.
“The thing about Sam is she just puts it in her purse and goes on with her life. It doesn’t define her as a person. It’s just a part of her life that she has to deal with. I admire her for that, she does live her life and it’s not the focus of it everyday,” Bender said.
Rettig is not eligible for an internal defibrillator until she is older once her body has stopped growing. Both Astry and Bender have internal defibrillators. Rettig said the worse part of her condition is the restrictions.
“I really like sports. I like softball, soccer and basketball. I went to do my first year of basketball and I couldn’t because of my heart. That was kind of tough for me to go through,” she said.
While Rettig cannot play most sports, she recently was cleared to play softball which she is excited about.
Prior to shaving her head, Rettig was inducted to the National Honor Society in the morning. Rettig was grateful the induction ceremony was before the Bald for Bucks event. Astry said the whole day was an “emotional roller coaster.”
“With everything that she goes through, she keeps her grades up. That was an emotional roller coaster to go back to the school and to see the confidence that she has and to see how poised (she is.),” Astry said. “I wish I, at her age, was as confident as she is. She doesn’t let peer pressure or anything bother her. She’s definitely a leader.”
Bender was also proud of her niece who was taking a stand for others.
“Dealing with the Long QT is a big deal,” Bender said. “Carrying around a defibrillator and being different already, and at that age … there’s no way we could shave our heads, make a stand for someone else.
“I give (Rettig) all the credit in the world. She’s a great girl. For all the challenges and obstacles that she has, she could be very angry at life and not want to do anything to help anyone else. It just shows her character and who she is. Her mom and I, and all her family are so proud of her. She is focusing on everything except what she has to deal with. Living life like we hoped she would,” she continued.
Rettig said she is thankful the event was in the Spring and not in winter. Astry joked she will save money on shampoo now.
“I like it short. A lot of people say I look good,” Rettig said.
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