Wednesday, May 15, 2013

Leukodystrophy and Krabbe Disease (Video interview with Natasha Spencer Witczak)


If you read my first post about Kenan Spencer Witczak, you might want to know more about Krabbe Disease. You may also want to understand what Leukodystrophy is.

My hope this month is to help raise more awareness about what is happening to Kenan and for people to spread the word about the disease and the need for required testing. Please learn more about Kenan's family at Kisses for Kenan.


Kenan and his big sister Tamsen

The following is an overview of what happens to a child with Krabbe Disease
(this information is from the Hunter's Hope website):

Signs & Symptoms (Infantile)
Symptoms usually begin at two to six months of age. The average age of death is 13 months. 
-Kenan showed signs at 6 mos. with regression in milestones)

Stage One: 
General irritability (excessive crying), stiffness, arrest of motor and mental development, loss of previously attained milestones, difficulty in feeding, and seizures.

Many babies in Stage One Krabbe Disease are misdiagnosed with colic, reflux, food/milk allergy, or even cerebral palsy. 
-He was officially diagnosed at 8 mos.

Stage Two: 
Children may have severe arching of the back, jerking of the arms and/or legs, more severe and rapid deterioration of mental and motor function, generally fed through a tube. 
-Read about Kenan's life experiences and current stages on Natasha's blog

Stage Three: 
Children lose mental and motor function, become deaf and blind, unable to move or speak. 
-Kenan cannot see, but he can hear

Later onset Krabbe Disease, while less common, delays the onset of neurological symptoms until middle childhood, adolescence or adulthood. 
-Kenan was given one year to live. He is now two.


Hear Natasha speak during a July 20, 2012, Chicago abc7 news interview.

Thank you for reading and please share this post with someone you know.

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