Created on Monday, 05 August 2013 Written by BRETT ZONGKER,Associated Press
ALEXANDRIA, Va. (AP) — Imagine having a child born with cataracts and brain damage who develops dementia and other symptoms more often found in the elderly — and not knowing what would cause such ailments.
Parents who share such experiences because their children have the rare genetic disease Cockayne Syndrome recently gathered their families together near Washington so their kids could meet others like themselves. Scientists and researchers joined them to observe their symptoms and to search for ways to provide treatment.
Experts say the children are mostly happy, enjoying each day of life. But they often experience poor growth, premature aging and sensitivity to sunlight. Those with severe cases often die young.
The Share and Care Cockayne Syndrome Network holds a conference for families each year because the unusual disease can be isolating.