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Josh Holdner 2006

Joshua Holdner 2007


VDuke Children's Hospitalideo
Joshua’s story - view the video by Duke Children’s Hospital

Read about Josh in
Duke Children’s Hospital newsletter

Duke newsletter

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This site is about a boy, a devastating disorder, and hope.  The boy is Joshua Holdner, now 10 years old. The devastating disorder is a rare genetic metabolic disorder known as Tyrosinemia Type I.  Hope comes from those of us who know Josh and his family, and all the volunteer efforts to raise money for research of this disorder.  And now, maybe, from you too.

Joshua Holdner is one of approximately 100 children in the United States—and the ONLY one in the state of North Carolina —to have this rare genetic disorder.

Get a more personal look at Josh and his family by viewing this video done by Duke Children’s Hospital,  as well as the photo gallery.  And be sure to check out the events page.
 

What you can do

Frankly, we need your money along with your prayers. To date, there is little research available. This is where you can make a difference.

  • Attend our fundraisers—visit this site often to learn what activities are planned. See events.
  • Go to donations to donate online, or send your tax deductible donation to:
    XXJoshua's Cure
    XXP.O. Box 1106
    XXCary, NC 27511-1106
  • Learn more—navigate this site using the links across the top and down the left side, in addition to any links within the pages. The skateboard photos above link to a PDF1 file that provides more information.

Add your hope to ours, and your dollars to ours, to help us learn how to save these young lives. Our efforts are voluntary, so all your donation dollars go to research.  Keep Joshua, his family and the other children suffering from this disorder in your thoughts and prayers.  Together we can all make a difference!
 

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Duke Children’s Champion
2006 ~ Josh Holdner

Josh was chosen as the 2006
Duke Children's Hospital
Champion for Duke Children’s Hospital. Click here to read the story.

 

About Tyrosinemia Type I
Tyrosinemia Type I is characterized by a lack of the enzyme FAH (fumarylacetoacetate hydrolase), which is needed by our bodies to break down the amino acid Tyrosine. Failure to properly break down Tyrosine, resulting in an accumulation of this amino acid in the body, has adverse affects on the liver and may eventually cause severe liver disease. High levels of Tyrosine may also accumulate in the kidneys and central nervous system.

Symptoms associated with Tyrosinemia Type I include failure to gain weight, unusually slow physical development, jaundice, fever, diarrhea, vomiting, and an enlarged liver. A child diagnosed with Tyrosinemia does not usually live to his 10th birthday. A liver transplant could be the only known treatment for this disorder, and because of its complex nature and associated risks, this surgery is considered as a last resort.
 

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