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Justin and his Mom

Justin Kase Brubaker 11/06/97 to 10/04/09
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Welcome to Justin's webpage. This has been designed so we can keep you updated on Justin's progress. Justin was diagnosed with a Mitochondrial Cytopathy/COX Dificiency in April, 2005. In March of 2008 we found his exact mutations. These mutations gave a more specific diagnosis of Alpers Syndrome; one of the many Mitochondrial diseases. Some of the symptoms he goes through are uncontrolled seizures, chronic constipation, GERD, cyclic vomiting, migraines, he is ataxic, has hypotonia, and we have been struggling with him to gain weight. He got a g-tube in May of 2006 to help with hydration, meds and supplemental feedings.In July of 2007 the G-tube was changed to a G-J tube as his tummy is not digesting properly and we are hoping for better nutrition. In March of 2009 he started on TPN(IV nutrition through a central line in his chest) because his tummy and intestines have slowed down even more. He can no longer walk on his own and usually uses a wheelchair or can scoot or roll across the floor. We pray every day for a cure. Please pray for a cure too.

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Journal

Wednesday, June 15, 2011 1:16 AM CDT

So where do I begin. I miss you Justin more than words can ever say and I hope I can hold you again when it is time for me to join you.

Life is going really well. I just got a job at a nursing home and it starts on June 20th. I am taking my last final for the quarter tomorrow. I am moving also right now. It is kind of bitter sweet. I am moving out of the last home I shared with my boy but moving forward and moving in with my boyfriend. I know crazy! eventually I will be probably shut this site down but I am not there yet.

God Bless!

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Links:

http://www.umdf.org   Mitochondrial Disease
http://www.heartbeatsformito.org   Webpage dedicated to those with Mitochondrial Disease
http://www.nwmito-research.org   mito research guild in seattle


 
 

E-mail Author: karenbrbkr@yahoo.com

 
 

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.
 
 
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