Monday, June 29, 2009
Krabbe's Disease and Greyson's Story
A wonderful Texas law passed to prevent Krabbe's disease in newborn infants.
A test, if given at birth, can prevent the certain tragic end to every child born with this disease.
Greyson's story, what no one knew...
Greyson was born with Krabbe’s disease. A rare form of leukodystrophy that slowly but surely attacks the nervous system and almost certainly ends in death for those that have it, mostly children under the age of two years old. While the loss of a child is certainly tragic under any circumstances, Greyson’s death is particularly tragic as a simple heel-prick blood test, if done at the time of his birth, would have identified the disease and given options for treatment. That’s right - a simple Newborn Screen for this disease would have identified it and treatment could have began immediately. Instead, Greyson, like many of those before him afflicted with Krabbe’s and diagnosed too late to make a difference, died before he reached his first birthday.
A test, if given at birth, can prevent the certain tragic end to every child born with this disease.
Greyson's story, what no one knew...
Greyson was born with Krabbe’s disease. A rare form of leukodystrophy that slowly but surely attacks the nervous system and almost certainly ends in death for those that have it, mostly children under the age of two years old. While the loss of a child is certainly tragic under any circumstances, Greyson’s death is particularly tragic as a simple heel-prick blood test, if done at the time of his birth, would have identified the disease and given options for treatment. That’s right - a simple Newborn Screen for this disease would have identified it and treatment could have began immediately. Instead, Greyson, like many of those before him afflicted with Krabbe’s and diagnosed too late to make a difference, died before he reached his first birthday.
http://www.greysgift.com/Greys_Gift/Welcome.html
http://www.greysgift.com/Greys_Gift/For_Little_Texans.html
Timothy B McDonnell
Hope for Good
Saturday, June 20, 2009
Hope for Good
[hope]_Hope is a belief in a positive outcome related to events and circumstances in one's life. Hope is the feeling that what is wanted can be had or that events will turn out for the best. [1] Hopefulness is somewhat different from optimism in that hope is an emotional state, whereas optimism is a conclusion reached through a deliberate thought pattern that leads to a positive attitude.
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