Wednesday, August 18, 2010

Going the DISTANCE!! Awareness for NALD

     This is our grandson Vincent! This was taken on his #2 birthday. You may look at him and think he doesn't look that old... That's because he does grow longer, but he is still quite small. He doesn't sit up, he hears a little, can hardly see, crawl, or eat by himself... In fact, he is fed through a feeding tube.
     He has NALD. This is short for Neonatal Adrenoleukodystrophy. A genetic disorder on the Zellweger Spectrum. They said he wouldn't likely make it past 16 months, as his sister before him. He is now 27 months and doing quite well!! I absolutely LOVE his giggle!! No matter what my mood, HE can make me smile!! 
     He has blessed the lives of all who have come in contact with him and his sweet parents (albeit snarky father... LOL!)! They are a great example to us all!! They cherish each day they have with him and have an eternal perspective; always looking for the positive. They lost their daughter to this same condition at 16 months in January of 2007. *sniff*
Signature Look for Vincent!
The following details of NALD is courtesy of Health Central
     NALD is an inheritable disorder that affects the adrenal glands, the white matter of the brain and the testes. Some of the symptoms for this disorder include seizures, hyperactivity, crossed eyes, paralysis, hearing loss, and muscular weakness.

     Adrenoleukodystrophy describes any of several closely related inheritable disorders that involve the breakdown (metabolism) of certain fats (long chain fatty acids). These disorders affect the adrenal glands, nervous system, and testes.
     Adrenoleukodystrophy is transmitted as an X-linked trait (the neonatal form is by autosomal recessive transmission). It affects approximately 1 in 20,000 to 1 in 50,000 individuals from all races.

     It results in the accumulation of long chain fatty acids in the nervous system, adrenal gland, and testes, which disrupts normal activity. There are seven recognizedforms of the disease.
    The neonatal form appears shortly after birth and includes seizures and delayed neurological development, with death occurring in infancy or young childhood. 

A.D.A.M., Inc. is accredited by URAC, also known as the American Accreditation HealthCare Commission(


This hop is intended for real causes. (Please
don't make up silly or vulgar things to diminish the 
importance of causes that hit home to so many.) 

This should be concerning something you are
passionate about to help educate others in a cause
to make the world a better place,
create understanding, rally support, etc...
*Let's please keep it family friendly, too. Thanks!

If this grab doesn't work, go get the one from Diamond Potential
  • Write your post: Tell us about your cause, educate the world about it, let the world know how they can help in the cause. Remember that not everyone will be as passionate as you are about a given cause, but you will help others have a better understanding and will also find others to jump in and offer support to you and/or your cause.
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This week the new one's begin on #12. Please hop to as many posts as you can, follow if you choose and be supportive! If you haven't visited the previous posts, please include them! ((HUGS)))
This is a Blog Hop! 12 entries so far... you're next!
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