CALGARY – Laura Bibiana Restrepo is quietly charming. She loves to draw and smiles in a way that lights up the room when she talks about her family’s new pet, a white budgie named Misty.
“She’s still a little scared of us,” the 11-year-old said.
Laura is also painfully honest about her insecurities.
“She’ll make comments that hurt me to hear,” her mother, Bibiana, said as she wiped a tear from her eye.
“She’ll say, ‘I am ugly. People don’t want to be my friend because I’m ugly.’”
In reality, the young Calgary girl is beautiful, but a genetic disease has altered her appearance. Neurofibromatosis 1 or “NF 1” has caused a large benign tumour to grow behind her right eye.
“The growth has been pushing out her eye,” said Dr. Luis Bello-Espinosa, a pediatric neurologist with the Alberta Children’s Hospital, “and has been provoking some large slow growing of the forehead as well as the right side of her face.”
Doctors have monitored the tumour since Laura was six months old, and feel now is the time to take action.
“It’s grown and it’s now affecting her vision dramatically, and because there’s also bone malformation, she needs to have surgery now,” Laura’s mother said.
A team of 50 to 70 specialists are now working on Laura’s case and hope to operate within 12 months. In what will likely be an eight to 12-hour long procedure, surgeons will remove Laura’s tumour before reconstructing the right side of her face.
“There’s a whole team involved. Not only plastic surgeons but ear, nose and throat specialists, neurosurgeons, pain specialists, psychologists, psychiatrists… it’s a big deal,” said Dr. Bello-Epinosa.
Laura says thinking about the surgery makes her nervous but she’s also excited. She knows it will alter her appearance and when it’s over, she hopes to feel more confident.
“People aren’t going to ask about me or say that I’m ugly.”
Laura, her family, and her doctors, have all agreed to share Laura’s journey exclusively with Global News. We will be following her story over the next year. Be sure to watch Health FYI weeknights and check back online for updates.
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