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By Matthew Santamaria (msantamaria@hdsa.org)

Plans can change at an instant. One day, you can be travelling the world and then everything can change. For Bill Waddington, this was always in the back of his head.

When he was younger, Bill’s mother tested positive for Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

“There was really no impact on my childhood due to HD,” said Bill. “My mom tested shortly after the test became available when my brother and I were in our late teens, and when she told us she had the disease it didn’t really register.”

It didn’t register because Bill was young. He did not want to think about one day having the disease because it could be years away and he wanted to treasure every moment he had with his mother.

“When you’re that age, it seems an eternity away,” said Bill. “Who can even think about a disease that’s 20 years or so in the future.”

However, Bill and his brother knew the possibilities of testing positive. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

As the years went on, he would then see his mother develop more symptoms of the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. It normally appears between the ages of 30-50, and worsen over a 10-25 years period.

Over time, HD affects the ability to reason, walk, and speak. The symptoms include personality changes, forgetfulness, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

“It wasn’t until my brother and I were in our 30’s and mom started getting a little twitchy that HD began to hit our family,” Bill explains. “Then, as all of us that have to witness the effects of HD, the progression started from the twitches, to the jerks, to the stumbling, the walker, the wheelchair, hospice, then death.”

His mother fought to the very end. According to Bill, she was a bit stubborn but in a good way to fight HD. She became a frail sick person as she was not the same person that the brothers remembered.

For Bill, he knew that he wanted to be tested. One day, he wanted to live the American dream and have a family, house, and a white picket fence. However, he did not want his disease to affect one that he loves or his future child.

“At the time Mom started showing signs and it finally clicked with me what HD was and meant, I was single and out there in the dating world looking for my soulmate to live the American dream,” said Bill. “I needed to know whether this plan needed to change. I wasn’t going to potentially pass this ticking time bomb on to any child of mine, nor was I going to commit some poor girl to marrying me just to watch me die less than twenty years later.”

He also had to think job wise. Bill needed to know if he should keep up working more than forty hours a week, saving money to retire. His plan B would be quitting his job, zero out his 401K, and move next door to his brother to spend every moment he had with his family.

“I know a lot of people wrestle with the decision to test, and for good reason,” said Bill. “Me, I had to know so I could pull the trigger on taking plan A or plan B. This is an example of why it’s so important, as I said earlier, to get ahold of as much information as possible. I was making, what I thought, was a best plan B should I have had the gene.”

Bill did not need a “Plan B” as his test came back negative.

“I came out the other end of the test relieved I was negative, but didn’t take for granted how lucky I was, or how many others came out the other side of the test not as lucky,” Bill explains. “This is what spurred my immediate involvement with HDSA.”

Currently, Bill is married with two children. He is still active in the community for HDSA’s Orange County (OC) Chapter. Currently, Bill is the Chapter President. Susan Heppner, Pacific Regional Development Manager, praised Bill for the amount of outreach he does for the HD community.

“When he became involved with HDSA five years ago, Bill quickly jumped in as a volunteer and soon joined HDSA’s Orange County Chapter Board,” Susan explains. “As the Chapter President for the past two years, he is always looking to share our OC HDSA services, mission, and to expand the reach of the Orange County Chapter.”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

​This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org