A butterfly walk for Hannah Crego of Hannibal is scheduled for 1 p.m. May 24 at Sterling Nature Center.
Hannah, a sixth-grader at Kenney Middle School in Hannibal, suffered from Cockayne syndrome or CS, a reare genetic disorer characterized by poor growth, premature aging, sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan.
Hannah, who will turn 14 in August, appeared to be an average little girl until age 4. It wasn’t until the age of 8 and trips to various geneticists and specialists at the Cleveland Clinic in Ohio, Rochester and Boston that Hannah was diagnosed with CS type 3.
CS type 2 presents at birth while CS type 1 appears during early childhood.
Cockayne syndrome is very rare. 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.
The Cregos’ son, Hannah’s brother Nathan, does not exhibit any symptoms of the syndrome.
There is no treatment nor an effective therapy available for CS, which makes research and education of the syndrome critical.
Despite the syndrome’s manifestations, the correct diagnosis is often delayed or missed all together because of the rarity of CS and the significant variability that exists between cases.
Hannah has developed milder symptoms over a period of time and does not need a wheelchair, unlike many of the other children with CS.
The Butterfly Walk for Hannah will be held to raise money for research of cockayne symdrome.
All donations are being accepted in Hannah’s name and the event will include drawings, a bake sale and water for sale.
Donations may also be made online at firstgiving.com/cockaynesyndrome/2014-butterfly-walk-new-york
CS type I is characterized by normal prenatal growth with the onset of growth and developmental abnormalities around one year of age. Typical lifespan is 10 to 20 years.
CS type II is characterized by growth failure and other abnormalities at birth, with little or no postnatal neurologic development. Typical lifespan is up to 7 years.
CS type III is characterized by a later onset, lesser symptoms, and/or a slower rate of progression.. Expected lifespan is unclear, but can be 40 or 50 years.