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Jerry Jaminet and his sons Nicholas, left, and Austin, along with Colt Stillwell (waving) at the Share and Care Network's annual retreat held at the Doubletree Guest Suites Hotel in Boston on May 20, 2006. <br />
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The Share and Care Network was created in 1981 by Pat Cahill when her son Scott was diagnosed with Cockayne Syndrome.  A rare form of dwarfism, Cockayne Syndrome is a genetically determined condition whose symptoms include microcephaly, mental retardation, progressive blindness, progressive hearing loss, premature aging, and a shortened lifespan averaging 18 years.  Those afflicted have distinctive facial features, including sunken eyes, pinched faces, and protruding jaws as well as distinctive gregarious, affectionate personalities.<br />
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Because of the rarity of the condition (1/1,000 live births) and its late onset (characteristics usually begin to appear only after one year), many families and physicians are often baffled by children whose health begins to deteriorate after normal development.  It was partly with this in mind that the Share and Care Network was formed, to promote awareness of this disease as well as to provide a support network for those families affected.  In 1998 it began organizing an annual retreat, which has grown from three families in its inaugural year to more than 30 today.  Although the retreat takes place in the United States, families from as far as Japan arrive for this one weekend out of the year to share information and to support one another.

Jerry Jaminet and his sons Nicholas, left, and Austin, along with Colt Stillwell (waving) at the Share and Care Network's annual retreat held at the Doubletree Guest Suites Hotel in Boston on May 20, 2006.

The Share and Care Network was created in 1981 by Pat Cahill when her son Scott was diagnosed with Cockayne Syndrome. A rare form of dwarfism, Cockayne Syndrome is a genetically determined condition whose symptoms include microcephaly, mental retardation, progressive...
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