A family with Scotland County ties is once again organizing a walk this weekend to raise money and awareness about Cockayne Syndrome, a rare genetic disorder in children.
Laurinburg native Emily Smith and her husband Brent, are organizing the 2012 Butterfly Walk to benefit the Share & Care Network.
The walk is Saturday from 9 a.m. to 12 noon at at Summerfield Community Park just north of Greensboro. There will also be a silent auction, refreshments, door prizes, and T shirts. Live butterflies will be released in memory of CS young lives lost. This is the 4th year for the North Carolina walk.
The Smiths learned several years ago that their 5-year-old daughter, Abby, suffered from Cockayne Syndrome - at the time one of the only two cases in the state - according to Anne Todd, Abby’s grandmother who lives in Laurinburg.
The disease is characterized by poor growth, premature aging, sensitivity to sunlight, developmental and neurological delays and a shortened lifespan.
“It is a terrible disease that worsens over time and cuts the lives of children short,” Emily Smith said. “It impacts overall growth and development and prevents proper DNA repair. Some symptoms include microcephaly, cataracts, tremors, seizures, feeding difficulties, hearing and vision loss, liver complications, and severe sun sensitivity.”
According to the Cockayne Syndrome Network, the syndrome occurs when there is mutation of a gene. The disease occurs in children where both parents are carriers of the trait. There is no known cure.
Funds received from the National Butterfly Walk enable the Cockayne Syndrome Network to continue its mission to help children with Cockayne Syndrome and their familes improve their quality of life through support, education and research.
Organizers hope to raise $5,000. There are walks in other states, most around Oct. 1.
“Your donations help improve the lives of children with this devastating disease,” Smith said. “For example - Share and Care paid in full for Abby to have permanent lense implants placed over a year ago. Before this operation, she was held down at least twice a month against her will to place and remove temporary lenses. The temporary lenses were cloudy at best, painful at times, and frequently misplaced. Now she doesn’t have to endure the loss of vision or the repeated torture of lense placement.”
To donate, visit www.firstgiving.com/fundraiser/Abbyjewell-smith/Walk2012NC.
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