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"A
butterfly lights beside us like a sunbeam. And for a brief moment its
glory and beauty
belong to our world. But then it flies on again and though we wish it could have stayed, we feel so lucky to have seen it." Author Unknown |
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In late June, 36 children with progeria and their families gathered in the District for the 19th Annual Progeria Reunion. During the week-long event, the children, representing 17 countries, visited a variety of places, including Hard Bargain Farm in Maryland, Shenandoah National Park in Virginia and the White House.
At the all-expenses-paid reunions, many children are brought face to face with another child with progeria for the first time. Both the Philadelphia-based Sunshine Foundation, which has sponsored the events since 1982, and participants say the reunions allow the children to feel like they are part of an international family. "I couldn't ask for a better family," said Jamie Scullion, whose son Devin has progeria. This was Devin's third reunion. During this trip, one child died. Another died several days later. Enter
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| More About Progeria
Progeria is a very rare genetic disorder that induces an extreme acceleration of the aging process. Individuals affected by this disease experience conditions normally seen in older adults such as severe arthritis, respiratory weakening and rapid loss of skin elasticity. Werner's syndrome, one of several diseases in which progeria is manifested, appears in adults usually ages 30 to 40 although initial symptoms occur sometime around puberty.
Hutchinson-Gilford Progeria Syndrome (HGPS), also known as the "classic" form of progeria, is perhaps the most brutal as it exhibits signs within the first two years of life. Children afflicted with HGPS rarely live past their teenage years, and most die in early adolescence. Signs of severe coronary artery disease are often seen in children younger than 10 who are afflicted with this disease. Since it was first identified in the late 1800s, Hutchinson Gilford Progeria Syndrome has been officially diagnosed in more than 100 cases internationally, and the rate of occurrence is about 1 in 8 million infants. The estimated number of children with this particular type of progeria is currently 40 worldwide.
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| – Clare Oh washingtonpost.com |
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Web Resources
Sunshine Foundation |