On May 17 you might notice a change to Confederation building in St. John’s as it lights up blue and green. May 17th marks the international awareness day for Neurofibromatosis (NF). Most have never heard of the disorder, called the most common of the rare disorders, but one local family is all too aware of it. As the mother of a child with this nerve-wracking disorder, Dara Squires has been fighting to spread awareness of the disorder and it’s damaging effects on children like her son.
In addition to Confederation Building lighting up blue and green for NF Awareness on Tuesday, May 17th, Squires will be holding a rally outside the East Block starting at 5:30pm.
“There’s currently no provincial, nor even a nationwide awareness group for NF,” says Squires. “Coinciding with the rally will be the launch of Newfoundland’s first NF Awareness group.”
Approximately one in 3000 children are born with NF. The disorder can lead to blindness, deafness, brain tumours, cancer, learning disorders, bone deformities, and disfiguring tumours. There’s no cure and few treatments. There’s also no way of determining the severity of an individual’s disorder.
“We consider ourselves lucky, “ says Squires of her son, Emerson. “He only has learning issues, a couple of bumps (tumours), a heart murmur, perpetual itchiness, severe headaches, gross and fine motor delays, and possibly ADHD. He has a lot of medical appointments, but the news is never devastating…yet.”
Because the disorder is lifelong and progressive with no ability to predict the severity, the Squires family and others like them live in constant awareness of the potential complications. “I’d like to lose my NF,” says Emerson “it hurts and I wish I didn’t have it.”
“Sometimes it feels like we live in constant high alert, constant awareness,” says Emerson’s mom, “we’d just like others to know what the disorder is, and we want to reach out to others in the province who are like us.”
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