Connect with our local chapter:
By Matthew Santamaria (msantamaria@hdsa.org)

John Lattin was married to his wife in Jupiter, Florida. 

John worked for the Professional Golfers’ Association (PGA) as a Tournament Director for many major golf events. In 1990, he was recruited by Medinah Country Club in Illinois to run the US Open and the family moved up north.

However, Huntington’s disease (HD) came into his life. 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.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, forgetfulness, impaired judgment, involuntary movements, slurred speech, weight loss, and difficulty swallowing.

John’s behavior led to him separating from his wife as the disease was taking an emotional toll on the family.

“My dad must have known then that he was HD positive,” said Jaime Lattin, John's daughter. “He was in denial for as long as possible, but soon enough his ability to work, drive and perform daily tasks began to diminish.”

John would then move to Northwest Ohio because he wanted to be closer to his parents as they were growing older. Jaime’s grandparents took great care of him.

Then, John’s mother started to appear drunk even though she consumed no alcohol and was consulted by many physicians. She was finally diagnosed with the gene that causes HD and passed away at her home in her late seventies in 2006.

Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

Jaime would then move to Ohio to be closer to her father as she attended the University of Toledo and received a degree in Communication. John attended her graduation ceremony as he wanted to be included in everything possible.

Once she graduated college, she decided the time was right to get tested for the disease.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

Jaime tested positive.

“It was a tragic day,” Jaime explains. “It took a while to process the news and decide how to move forward. There was no other option but to move forward, positively, despite occasional tough days. I am lucky that my family is a huge support. I also have friends who still tell me that they will take care of me when and if the time comes. I wish that everyone with HD has the love and support that my family and friends have shown me.”

As for her father, he needed full time care. In 2013, Jaime and John would move back to Florida where they would have more family support. She quit her job in marketing because she wanted to stay home and take care of her father full time.

“With the help of an amazing Hospice team, I was by my Dad’s side until he took his last breath.”

In 2017, John Lattin passed away due to complications from HD.

Since his passing, Jaime wanted to be more involved with HDSA as she wants to raise awareness in her community and help those around her.

“Participating with HDSA’s South Florida chapter, I am thrilled to lend my time and energy to this cause,” said Jaime. “It is of the utmost importance for me to stay positive and show others affected by HD that you can still live a happy life full of love and achieve all of your dreams.”

###

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