Butterfly Walk - Pictured is  Fairley Elementary School student Hannah Crego, who has lives with Cockayne Syndrome, a rare genetic disorder. A Butterfly Walk will be held April 28 at 1 p.m. at the Hannibal Central School Track. Donations raised will be accepted in Hannah’s name for the research of Cockayne Syndrome.

Butterfly Walk planned for Hannibal fourth-grade student with Cockayne Syndrome

Butterfly Walk - Pictured is Fairley Elementary School student Hannah Crego, who has lives with Cockayne Syndrome, a rare genetic disorder. A Butterfly Walk will be held April 28 at 1 p.m. at the Hannibal Central School Track. Donations raised will be accepted in Hannah’s name for the research of Cockayne Syndrome.

by Nicole Reitz

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.

Cockayne syndrome is very rare, and in Hannah’s case, one in a million. In order for a child to be affected by CS, he or she must inherit a mutation in the same CS gene from both parents.

Hannah’s parents Jennifer and Jason Crego of Martville are both carriers of a single CS gene. A couple has a one in four chance of having another child with CS. Their son, and Hannah’s brother Nathan, does not exhibit any symptoms of the syndrome.

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