By Matthew Santamaria (firstname.lastname@example.org)
In 2022, Fort Worth, Texas resident Haley Pearce will be honoring her late grandfather, Jimmy Hawkins, by holding a Huntington’s disease (HD) golf fundraiser called the JCH Golf Classic. This will take place on Monday, May 2nd, 2022 at 7:00 AM at Bear Creek Golf Club in Dallas. To learn more, click here
“I am so honored and excited to be hosting the upcoming event,” said Haley. “This will be held in remembrance my grandfather who passed away due to complications from HD. He was fun, loving, and truly one-of-a-kind. He loved playing golf and being with family and friends. I hope this is a time for people to come together to play golf, learn more about HD and to be able to raise money for HDSA. I cannot wait to see this year’s turnout and the growth in the years to come.”
HD 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 during their prime working years and has no cure.
Jimmy was one of four children at risk for HD. Every child of a parent with HD has a 50/50 chance of inheriting the disease. Three out of the four children tested positive for HD including Jimmy.
According to Haley, she did not see her family members often. As she got older, she learned more about HD and noticed HD symptoms in her family members.
The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgment, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.
Jimmy’s symptoms included involuntary movements, falling, and slurred speech. This would be especially hard for Haley to see because she was extremely close to Jimmy.
Haley did everything with Jimmy and considered him another father in her life. He would help her with homework and go to every softball game that she played. According to Haley, she wishes she had more time with him. Losing her grandfather at 10-years-old was difficult because she was trying to understand HD and his worsening physical conditions as it was confusing and upsetting.
“Life is too short," said Haley. "Don’t take for granted the time you have with those you love, for you never know when your time will be up.”
As Jimmy’s symptoms worsened, he was placed in hospice care as it didn’t seem real for Haley to see. In November of 2006, Jimmy passed away due to complications from HD and this truly affected Haley.
After Jimmy passed away, Haley’s family found local HD fundraisers to attend that made the family feel that they were not alone. However, the HD battle is not over yet.
Jimmy’s son, Haley’s father, is at risk for HD. 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.
At this time, her father has not been tested and Haley is at risk. For Haley, this is a hard decision to make because she wants to know more about the testing process and does not know how it will affect her. She wants a detailed and oriented plan before making a decision.
Haley has a message for the HD Community:
“Growing up, I felt alone because nobody knew about HD in my family. It is important for you to reach out and ask questions because I hope that I did that sooner. I wish I knew sooner that you are not alone in the fight against HD."
Huntington’s disease (HD) 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 during their prime working years and has no cure. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD 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.
HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day.
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 email@example.com