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By Matthew Santamaria (msantamaria@hdsa.org

NOTE: The following story discusses the topic of domestic violence. If you are in a similar position, visit the National Domestic Violence Hotline or call 1-800-799-7233.

Iowa resident Sarah Sposato does not have Huntington’s disease (HD) in her family. However, her children are at risk.

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.

At 19-years-old, Sarah met Creighton and his mother was sick, but was misdiagnosed. Her symptoms included walking issues and she couldn’t feed herself. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

His mother would then go to a specialist at Nebraska Medicine. This is one of the 54 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program. 
 

She soon learned that she tested positive for HD. However, Creighton did not tell Sarah about the diagnosis. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene. Even though he did not tell her, Sarah noticed changes in Creighton.  

According to Sarah, he was sweet and always laughing. However, he started to develop angry moods and became very standoffish. Creighton would cheat on her as he developed urges which was out of character for him. His judgement was also off, and he became abusive towards Sarah by the time his oldest son, Elijah, was 5-years-old. Sarah was put into the hospital a few times.

His symptoms would leave her confused as she did not know what was going on. He was never aggressive towards his children. After their second child (Trayton) was born, Creighton was arrested and sent to jail but was released after his symptoms progressed. 
 

Because of this, Sarah learned her children were at risk for HD. Creighton was then placed into hospice alongside his two brothers and two sisters. University of Iowa, another HDSA Center of Excellence, assisted with setting up the family in hospice.

As for Sarah, she had to do her research about HD. She had assistance from the University of Iowa as she was worried about Elijah and Trayton’s future. She started to read all the books related to HD and wanted to learn everything she could to help her children. Because of this, Sarah had more stress which resulted in loss of hair and weight.

The University of Iowa helped as much as they could. Alongside the center, Sarah discussed HD with her children as Trayton developed symptoms at a young age.

When Trayton was 2-years-old, Trayton cursed out Sarah which she thought was just a phase. Trayton would hit Sarah but his anger stopped for a while. In school, the teacher was concerned as Trayton developed an aggressive behavior. This is when the University of Iowa stepped in to discuss the details of HD.

According to Sarah, Trayton is now 10-years-old but is not officially diagnosed with Juvenile Onset Huntington’s disease (JHD) which is an aggressive form of HD that affects children and teenagers. Social workers have talked to Sarah and her family, but family members are in denial about JHD. Trayton was a part of a first research trial and will officially be tested this year.

As for Elijah, he is now a teenager. He has been through the research program since he was 10-years-old. According to Sarah, she has not seen HD symptoms in Elijah and has not been tested yet. Sarah also has two younger children with someone else as they are not at risk.
Sarah has a message for the HD Community:

“We are all in this together. Let our voices be heard.” 

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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 msantamaria@hdsa.org