An inside look at 10 year-old-girl with hair loss disease
by Skyla Clarke, STAFF WRITER
Source: Skyla Clarke
Sophie Sevigny of Sanford is a 10-year-old girl with a disease called Alopecia. One might think that having a disease like Alopecia would cause bad health or depression, but in this case, you could explain it as the opposite for Sophie.
Alopecia is a disease that “attacks” the hair follicles, causing no hair to grow on the body. In some cases of Alopecia, you may lose only patches of hair, but in other cases (like Sophie’s), you may lose all of the hair on the body. This includes the eyebrows, eyelashes, hair on the head, arms, legs, nose, ears, etc.
“Alopecia is an autoimmune disorder and so you don’t get sick from Alopecia, it’s because you have other disorders related to it,” Beth Letourneau, Sophie’s aunt, said. “She has something called, Eosinophilic esophagitis (EoE), and it’s an autoimmune [disease]where basically eosinophils in your throat close up and it makes it hard to swallow.”
Sophie was born at the Maine Medical Center and was adopted at the age of four months. A few years later at the age of about six Sophie started to lose her hair. “It first grew in patches, but after there were about five pieces of hair left I decided to have an Alopecia party,” Sophie said. At her Alopecia Party, she had her head shaved along with other people that are close to her, Sophie was extremely happy they participated.
Sophie is an athletic and bubbly girl. She’s very petite given her age but won’t give up easily. Her confidence is bigger than you would imagine and is full of inspiration and happiness.
Sophie loves gymnastics and enjoys playing field hockey. She’s been doing gymnastics for a few years, and she benefits from the fact that she is small and muscular.
“She’s part of the New England Regional Water Ski team that competes and has a show every Thursday during the summer at Number 1 Pond,” shared Letourneau, adding that Sophie is very strong and athletic.
According to her aunt, Sophie has progressed a long way since she was a baby. “She’s had a lot of different therapies from feeding therapy that she doesn’t do anymore, to help with learning,” Letourneau said. She’s also been doing tutoring to make sure she’s at grade level [and/or] above grade-level standards.
The option of wearing wigs is always open to Sophie. But she prefers to not wear a wig, not just because they are hot, scratchy and uncomfortable, but because she feels comfortable in her own skin and would rather be her instead of someone she’s not.
Sophie enjoys cooking and baking with her aunt. “We like to go shopping together and make Tik Toks together,” Letourneau said.
As a young girl, Sophie has been thinking about a career. She has a dream to become a nurse, so she can help others like others help her.
“We are very proud of her!” Letourneau said.
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