Zach West

Welcome to Zach's Website. Zach is the strongest fighter I know. He has been fighting a progressive disease. It has taken away his ability to walk and develop normally. Although life is tough, Zach is much tougher!!! This is to keep everyone informed of Zach's fight! Please sign the guestbook, I want to have this for a keepsake when Zach wins this battle. Thanks to everyone for their love, prayers and support

Zach has been diagnosed with Infantile Neuroaxonal Dystrophy a rare progressive neurological disease, and a secondary Mitochondrial Disease.
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For those of you that have asked-
Donations can be sent to
Klein Bank
C/OZach West Benefit Account
1407 Vierling Dr East
Shakopee, MN 55379

Journal

Thursday, October 2, 2008 8:11 AM CDT

Link to see Story on WCCO.

http://www.wcco.com/video/?id=48406@wcco.dayport.com

or www.wcco.com



Zach is going to be on WCCO Channel Friday night at 10pm for a followup!!


I wanted to share these statistics really quick. I emailed one of the researchers for INAD to ask her a question about how many we know that have INAD this is the answer we got and it floored me. Just think there are 6 billion people in this world.

"So, statistics are tricky because INAD is so rare that we can only guess. That said, we think the incidence is 1 per million or less. We keep the only international registry of families with this diagnosis. We currently know of approximately 17 kids in the U.S., but I am certain there are more. We have a total of 97 individuals with INAD in our database from literally all over the world: U.S., Italy, Portugal, Croatia, Canada, Israel, France, Poland, Belgium, Australia, Germany, The Netherlands, Iceland, Turkey, The U.K., Tunisia, Norway, Denmark, and Japan. It is important to point out that since we have found the gene and testing is available, more patients are being diagnosed and we are beginning to understand that the symptoms are more broad than we previously thought, so more and more “atypical” people are being diagnosed. "


One a personal note I was at my neighbor's that I don't see very often and she said that she has to tell me that she has never seen such a great person with Zach. That her and her friend who deals with special needs kids daily saw Janae and Zach at the pool and was astounded by her and Zach's relationship and how good she was with him.He friend even said she has never seen a PCA that awesome! WE have been very spoiled over the last 5 years and I want to thank Janae for loving Zach as she has. She is already missed terribly for not being a part of our 3 days of week life. We love you Janae! ( P.S I have always known how extrodinary you are!)

Read Journal History

Hospital Information:

Links:

E-mail Author: rlaco2001@yahoo.com

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