Ed (top), Bryan (below)

My name is Patty and my husband Ed Mabry and my son Bryan Mabry both have Huntington’s disease.  Ed (top) was diagnosed with HD in 2001. We were stationed at Naval Air Weapons Station, China Lake, CA.  He had just been advanced to Chief Petty Officer.  I can remember the day we got his test results, we went back to our home at the time on base, I went into the bathroom, sat on the floor and just cried, he opened the door and asked me what was wrong, I said to him, you were just told you have HD, his response to me was “we’re all going die”.  Due to his diagnosis of HD, he was medically retired from the US Navy in 2003 and we moved back to our home town of Moriarty, NM.  Ed continues to progress and in 2008 was placed in a nursing home where he is now in hospice.  Bryan our son (below) was diagnosed in 2009 just having turned 22.  For me hearing the positive test results for both of them was just a confirmation, I always kind of  knew that they had it, I guess I just needed the professionals to tell me in their own words.  Ed & I also have a 22 year old daughter Angela who is at risk.  We have made it a priority to find out everything we can about HD, we advocate and raise awareness everywhere we go.  We are all members of our local support group in Albuquerque.  Angela is about to kick off her second annual bowl-a-thon which see has spent many hours planning on her own.  Like other HD families, we do not have a lot of family support, so we do the best to support each other and very much welcome the support of our HD families.  We are looking forward to the convention next month to finally get a chance to meet some of these families and to bring back home very important new and updates on HD to our support group.  HD is a “family disease,” not just because it is inherited, but because it profoundly affects the entire family EMOTIONALLY, SOCIALLY and FINANCIALLY. There is no effective treatment or cure for HD. We are fighting against time in order to save our friends and families.

 (Submitted May 2012)

 

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