Mom of Girl with Facial Deformity: “Make Her Normal”
Even when Clara Beatty was in her mother’s womb, doctors already knew something was wrong.
After multiple tests confirmed the diagnosis, Eric and Janet Beatty received the grim news: their unborn child suffers from a genetic disease, Treacher Collins syndrome, which will cause her to be born with severe facial and external deformities.
At this point, the doctors gave the parents the option to abort the fetus, but without a second thought, the parents said no.
“There was just no question,” Eric recalled. “It was kind of strange sometimes with the doctors, some of whom I think really, really questioned why we had this baby.”
When Clara was born, their worries were realized. She had drooping eyes, almost-absent cheekbones, a small underdeveloped jaw, and no outer ears.
With constant breathing and feeding issues, the family eventually resorted to 24-hour nursing care. For the first three years of her life, Clara vomited every time she at.
“Make her normal,” her mother Janet eventually thought. “I want that normal kid. I didn’t want people to stare, and I didn’t want people running away from her.”
But despite her external deformities and disabilities, Clara, now 9, grew up to be a bright child. “Even when she was little, you could look at her and people would say there’s an old soul in there,” her mother recalled.
Clara even volunteers as a mentor for the Special Gifts Theater, an acting camp for children with disabilities. “It’s fun to help someone and give them a better chance at life,” she said.
However, while she may take things in stride, things are difficult outside the protective bubble of family and friends. “I want to try to make myself as much like the other kids,” Clara recalled. “So that I can stop having everyone asking me questions because it gets so annoying.”
“I just don’t want her spirit to ever be crushed so much that she can’t recover,” her mom adds. “That’s why it’s good that she has the thick skin. I just want to keep it thick.”
Clara’s parents will consider cosmetic surgery options once she becomes a teenager. While her facial features cannot be completely redone, her discomfort may hopefully be alleviated.
What would you have done if you were Clara’s parents?
For more on the Treacher Collins disease, check out the Discovery Health feature below.