By Shaun Heasley
For Disability Scoop
August 28, 2009
It’s challenging enough to have a child with a health problem or developmental delay. But for parents of children whose symptoms don’t match up to any particular diagnosis, the road is even bumpier.
Now one Texas mom is hoping to ease the way for other parents of children with unknown illnesses by promoting a national registry.
Heather Long’s son Charles died of an unidentified neurodegenerative condition in 2006 at age 5 after living with weak bones, difficulty eating and poor motor skills.
Today, Long is promoting a bill in Congress which would create a national database for doctors and researchers to input information about children like her son. Such a system would be designed to foster better communication among medical professionals so that conditions can be identified, treated and cured.
Currently, doctors say, there are few places to turn for information when treating a child with an unidentified illness.
Legislation named for Charles Long, which would create a registry, is now under consideration in the House of Representatives, reports the Dallas Morning News. To read more click here.
http://www.disabilityscoop.com/2009/08/28/illness-registry/4778/
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