Team Mackenzie Kintner Fundraising Page
Our daughter Mackenzie was recently diagnosed with Cockayne Syndrome after 4 years of searching for answers. Cockayne Syndrome (CS) is a rare genetic disorder characterized by poor growth, premature aging, microcephaly, sensitivity to sunlight and developmental delays just to name a few. Because of the multiple complex medical issues children with this syndrome have a shortened lifespan on average (4-7 years). There are only 200-300 children in the World with this rare genetic syndrome
For those of you that have met Mackenzie know she is a true angel. Her simple smile lights up a room. She is a true blessing to us, and we are honored to have her in our lives.
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. Its goal is to also raise awareness and support medical research.
The 2nd Annual Butterfly Walk is a walk-a-thon event aimed at raising funds for Share & Care Cockayne Syndrome Network.
The walk will be held on Saturday, October 3rd, 2009 at SanfordRiver Walk / FortMellonPark, in Historic Sanford, Florida. The start of the walk will be at FortMellonPark.
Please register by September 24th, 2009 to confirm your shirt order. Walk day registration starts at 4pm, and the walk begins at 4:30pm.
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.
If you have any questions, contact Kim Kintner at: 407-616-7220 or kbnsk1@aol.com