For many families, having a child with a life threatening illness is a reality.  I would like to share with you the story of my own children who had a rare genetic syndrome, called Cockayne Syndrome (CS).  This syndrome is a form of advanced aging (progeria) which causes multiple complex medical issues. Children born with this syndrome have a shortened lifespan (3-7 years). 

Our daughter Eden passed away 2 months at age 5.5 years and our son Ian passed away at age 5 in 2003(he was undiagnosed).  Because Cockayne Syndrome is a rare genetic illness, affecting only around 200 children worldwide, there is little research and awareness to speed curative or comfort measures for these beautiful, social children.   

The Share and Care Cockayne Syndrome Network is a 501 (c ) (3) worldwide support organization for families of children with Cockayne syndrome. This organization provides much needed support to children and families dealing with Cockayne Syndrome.

Share and Care has organized a national fundraiser; the 2009 2nd ANNUAL BUTTERFLY WALK to raise money for Cockayne Syndrome. The walk will be held on October 3 at Arrow Head Park in Oliver Springs and it will be a 3 mile walk. Walks starts at 11:00am and sign in begins at 9:30am.  All funds raised will go to Share and Care to support families who have children living with CS and to support  CS research and awareness.

Please join my family in our commitment to help families and children living with this devastating syndrome. With your help we can and will make a difference in the fight for Cockayne Syndrome research and awareness.

To learn more about Eden, Ian and Cockayne Syndrome visit  www.cockaynesyndrome.net

If you have any questions Contact:
Tim or Haylee Carroll
865-466-4634 or leehay79@gmail.com