Faces of HD

My name is E.J. Garner; my former husband (Doug); son (Scott) and grandson (Matthew) suffered from Huntington’s disease (HD) and ultimately passed away from it. Most people struggle to find purpose in their life. Well, crazy as it may seem, having HD in my family has given me purpose to my life. My purpose is to bring awareness to HD; to raise funds for research; and most important, my purpose is to support those living with HD and those who have lost loved ones to HD.

My story started even before I met Doug. His mother died when he was 12 years old in 1962 while she was in a state mental institutional hospital (Camarillo, CA). Back then, little was known about Huntington’s disease and his family didn’t speak of the disease that took her the life. All the family said was that she had a mental disorder and that it may be passed on to her children.

Doug was diagnosed with HD in the late 80’s. In 1993, at age 43 years, he was admitted into a full-time care facility in Tustin, CA. On August 20, 2002, Doug passed away at age 51 from complications of HD.

Our son, Scott grew, developed and thrived as any other healthy child. He enjoyed the same outdoor activities as his father did. Scott married his college sweetheart, Katy in 1997. On April 25, 2002 they had a beautiful baby boy, Matthew.

Two years later in August 2004, they were blessed with twin daughters, Anna and Emma. Unfortunately, that same year, Scott began displaying signs of the HD. In June 2006 he was diagnosed with the HD gene. As a result of his HD symptoms, Scott had to leave his job as an Urban Development Planner thereby ending his financial livelihood.

At age 4 years, my grandson, Matthew began displaying signs of delayed development and had his first seizure in January, 2007. The symptoms progressed significantly and sadly, after several seizures and setbacks, he was ultimately diagnosed with Juvenile HD in July, 2007 at age 5 years. Juvenile HD is much more aggressive as you can see by this timeline. The disease took over his mind and body. On May 21, 2008, at age 6 years Matthew passed away from complications of Huntington’s. Although his little body just couldn’t fight any longer, he continues to help find a cure today, because Matthew’s brain was donated to University of Washington – Center of Excellence for HD research.

Scott’s wife, Katy did a remarkable job as his caregiver until it became physically challenging for her. In June 2014, Scott was admitted into Bailey Boushay House which is a full-time care facility located in Seattle, WA. On January 23, 2015 Scott passed away from Huntington’s at age 44 years. Scott too continues to help find a cure for HD. It was extremely important to him to donate his brain for HD research at University of Washington – HDSA Center of Excellence.

The ugliness of how this disease ravages the human mind and body is heart-wrenching and how it impacts the family is heart breaking. The helplessness that families and friends of those with HD must withstand is emotionally, as well as financially draining.

As I mentioned in the beginning, this disease has provided me with my purpose in life. Since 2006 I’ve been involved with the HDSA organization and relied on their resources and support over the years. I try to raise awareness by telling my story to anyone who will listen and participate in various HDSA fundraising events including eight HDSA Team Hope Walks. But this year instead of walking in a beautiful park in Irvine, CA for HDSA-Orange County, I’ll be walking 554 miles (891.576 kilometers) across northern Spain on the “Camino de Santiago Pilgrimage;” which should take me approximately 55 days.   I am walking in memory of my son Scott Bradley and grandson Matthew. My personal fundraising goal is $8,915.76 (which is the number of kilometers I’ll be walking). My trek will be from August 21^st to approximately October 14^th.   As a small token of my appreciation to those who donate to my fundraising page, I’m asking them to select a date during my pilgrimage so I can dedicate that day to them and post a special message on my Facebook and blog page.

What is my wish for the future? Obviously, my prayers would be answered if in my lifetime there was a world without HD or at least “a magic pill” to delay symptoms. My granddaughters are now 11 years old and thankfully not showing any signs of HD however, they are still at risk. So in the meantime, I’ll continue with my life’s purpose to fundraise for research and tell my story to anyone who will listen.

To support E.J.’s trek, please visit: http://hdsa.donordrive.com/participant/ejgarner