In the comedy drama film Jack, Robin Williams had an exaggerated case of adult progeria — an aging syndrome — which caused him to grow as big as an adult, even though he was only of kindergarten age. Because of the disorder, a chunk of his childhood was spent in seclusion in his parent's house. Children who are affected by Cockayne syndrome, another rare aging disorder, might experience a similar sense of isolation. Recently, the Share and Care Cockayne Syndrome Network held its annual conference, with the goal of bringing kids with the syndrome together and looking into possible options for treatment.

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Cockayne Syndrome affects an estimated two per one million newborns in the U.S. and Europe. It's characterized by short stature, abnormally small head size, impaired development of the nervous system, sensitivity to sunlight, and premature aging, according to the National Institutes of Health (NIH). Children often lose function of their sight, hearing, and central and peripheral nervous systems within the first or second decade of life, and those with more severe cases often live just a few years. However, there have been cases in which less severe onsets have affected people into their 40s.

"Slowly everything started to unravel as we discovered that she couldn't hear and she wasn't developing right," Jackie Clark, the mother of Gigi, a girl with symptoms such as cataracts and itchiness, told CBS. "It took us five years before we were able to figure out that she had Cockayne syndrome. At that point, she was already close to the end of her lifespan. She died four months later."

For children with such grim outlooks, they are happy and young at heart. Children with Cockayne syndrome and their families congregated in Virginia for a retreat held by Share and Care, where they were able to meet other kids with the syndrome, play games, do arts and crafts, among many other activities scheduled to help the families make the most of the time they had with their kids.

Treatments For Cockayne Are Virtually Nonexistent

Doctors also attended the conference to observe and look for new ways to treat the disorder, which is even difficult to diagnose. There's no cure or treatment for the disorder; healthcare providers can only treat its symptoms.

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"I had learned about it in textbooks and seen pictures, but that's not the same thing as seeing it," Dr. Philip J. Brooks, an adjunct investigator and rare disease researcher at the NIH, told CBS. "That had a big impact on me and made me want to study this and to do something to help these people."

"Once you've seen a condition, it takes on a personal memorable aspect to you and becomes easier to recognize," Dr. Edward Neilan, who has treated children with Cockayne at Boston Children's Hospital, said.

Scientists have only identified the gene mutations that cause it. These genes — the ERCC6 or ERCC8 gene — are responsible for producing the proteins that repair damaged DNA. However, these genes aren't able to produce these proteins. When a child with Cockayne syndrome is exposed to sunlight, for example, DNA damaged by ultraviolet light can't be repaired. As abnormalities build up in the DNA, cells malfunction and die. This leads to a domino effect of cell deaths that contribute to the symptoms of Cockayne syndrome.

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The NIH is funding research into Cockayne syndrome. At the conference, Dr. Alan Weiner, a biochemistry professor at the University of Washington, took blood samples to test whether the children's cells are similar to the laboratory cells.

"If they do, it might suggest new remedies that could actually be tried now," Weiner said.