A Butterfly Walk for Hannah Crego, a fourth grader at Fairley Elementary School, will be held April 28 at 1 p.m at the Hannibal Central School Track.
Crego has Cockayne Syndrome, or CS, a rare genetic disorder characterized by poor growth, premature aging, sensitivity to sunlight, moderate to profound developmental and neurological delays and a shortened lifespan.
Crego, who will turn 12 in August, appeared to be an average little girl until the age four. It wasn’t until the age of eight and trips to see geneticists and specialists at the Cleveland Clinic in Ohio, Rochester and Boston, that Crego was diagnosed with CS type 2. CS type 1 presents at birth.
Cockayne syndrome type 2 appears during early childhood. Crego’s local physician, Dr. Stuart Trust had never seen a case like hers.
The Youth Advocate Program, located at 616 Oneida St., Fulton, is in the business of keeping kids and families together at home.
YAP, an alternative to a placement program, is a contracted service by the Department of Social Services. Families are referred to YAP off the DSS case load and work with a wide range of situations throughout Oswego County.
Most of YAP’s cases are either school-related issues, parenting or the parent-child relationship.
“The county has different things that they can do with kids who are at-risk of residential placement,” said David Canfield, Oswego County director of YAP. “We don’t have the stigma that a lot of times DSS walks in with. DSS recognizes that they don’t have the resources with families that YAP can have. We’re here to work closely with DSS to help them do their jobs better, easier.”