May 31, 2013 | 1124 views
Walking for their ‘angels’
New Yorkers gather to raise awareness for Angelman Syndrome
Hundreds gathered in Eisenhower Park on May 18 as a united front to raise awareness for a neuro-developmental disorder that very few are aware of — Angelman syndrome.
First described in 1965 by a British pediatrician named Harry Angelman, approximately 1 in 15,000 people have Angelman syndrome, which is typically found in infant children.
The symptoms of the disorder include severe developmental delays, an inability to control movement or balance, speech impairment and seizures. A behavioral uniqueness also associated with Angelman syndrome is a frequency of laughter and smiling, or a wide mouth and protruding tongue, giving those affected a happy, euphoric facial expression. Indeed, before its diagnosis 50 years ago, the disorder was referred to as Happy Puppet Syndrome.
Because of its name, and the joyful appearance of those who have it, people with Angelman syndrome are commonly referred to as “angels.”
Angelman syndrome is usually not recognized in early infancy since the developmental problems are nonspecific. It is not until the ages of between 2 and 5 when children are typically diagnosed. As of today, there is no known cure.
Because of the nonspecific symptoms, those who have it are commonly misdiagnosed at first, especially since it is closely related to autism.
May 18 marked National Angelman Syndrome Day, with awareness walks taking place in 30 states. It was the third annual walk at Eisenhower Park, according to the event coordinator, Iris Faver. More than a dozen ”angels,” with their families, joined together in attempt to raise awareness for an illness that does not receive much national attention.
Faver, from Bellerose, Queens, said it took doctors two years to properly diagnose her daughter Allie, a time period that saw her go in and out of hospitals for treatment. Initially, it was believed she might have autism or cerebral palsy.
But Allie, now 7, who does not speak, continues on with a smile on her face, and was recently enrolled into a ballet class for children with special needs. “Don’t set limitations,” said Faver. “They surprise you every day. The sky’s the limit for them.”