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By Matthew Santamaria (msantamaria@hdsa.org

Through the good and bad times, you will always have your family close by and in your heart. In 1997, Bobbi and Eric Orel were married. Though they remained best of friends, they unfortunately divorced in 2004. They would always keep in contact as they had a daughter, Kaytrin, together. Both were very close to their daughter and that would never change. However, something would change that the family could never imagine.

In 2007-2008, Eric Orel was diagnosed with Huntington’s disease (HD). This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.

HD sadly runs in Eric’s family. They watched his mother succumb to it over the years. Once Eric told his family, Bobbi reflected and realized, the symptoms he showed in earlier years was due to Huntington’s, but they didn’t know it was Huntington’s at the time. One of the signs was frustration and outbursts.

They wanted to be open and honest with their daughter. After much consideration, they made the decision to inform their seven year old daughter that her father has been diagnosed with HD. Eric and Bobbi were worried that Kaytrin would one day have the disease just like Eric and his mother. However, Kaytrin was not the only one at risk. Eric also has a sister who is HD positive and her four kids are at risk of having this disease.

Kaytrin lost other family members to different illnesses and the 50/50 percent chance that she would get HD must have taken an emotional toll on her. However, Bobbi says her daughter is and remained incredibly strong. The Orel’s proved how strong they are as they were going to battle this disease together and Eric would not be alone in this fight.

Bobbi and Kaytrin were determined to find out more about the disease and wanted to help the HD Community anyway they could. At a young age, Kaytrin would write reports in her class in regards to HD. This was a way for her to do more research and help her father anyway that she could. Even now in college, she would do communications presentations for classes to help spread awareness regarding PGD ( pre-implantation genetic diagnosis) to test for the gene to ensure it is not passed on if you carry the gene. Which at this time, is the only way to not pass it on to future generations.

For the past three years, they have gone to the Huntington’s Disease Society of America (HDSA) Convention where they would meet different families who are going through the same situation. For their first convention year in Baltimore, they were awarded an HDSA National Convention Scholarship. The intent of the scholarship is for the family to be accommodated with transportation, hotel, and convention fees to ease the stress of being able to attend such an important informative event that changed their views and lives.

Bobbi and Kaytrin then joined the Orange County HDSA Chapter board in Southern California. They would attend the chapter events as well as the National Youth Alliance (NYA) events and the HDSA Team Hope Walks. Also, Bobbi and Kaytrin would host the NYA booth at bowling events/fundraisers to raise awareness and funding for research. According to Bobbi, this is a way for the family to be there and connect with other families about the disease and to know that they are not alone.

Kaytrin also volunteered to do a youth “at risk study” in Iowa. They both feel that the NYA has been a saving grace for them all. Kaytrin was able to meet and connect with others close to her age and openly share feelings and fears but mostly make incredible friends who to this day are still there to support one another whenever needed.

Currently, Bobbi resides in Nashville, Tennessee where she attended an education day for the HDSA Tennessee chapter and hosted an NYA booth there to inform others of the support groups that are available to those who are not aware. Cody Morgan, Eric’s nephew, helps take care of Eric on a daily basis in California. According to Bobbi, Cody is an adopted son of the family. He and his wife Kassie go above and beyond for Eric. Kaytrin helps anytime that she can but she currently attends college at California Polytechnic State University. The college is 4 hours away in San Luis Obispo, Ca. It is hard on them both to not be there to visit Eric a couple times a week, as they always have, but they make every effort to get there as often as they can.

The family has continued to stay positive as it is an extremely emotional, difficult and personal choice as to getting tested for the gene. The family believes knowledge is power and Kaytrin knew she wanted to be tested on her 18th birthday. Thankfully the news was a relief. Kaytrin was tested for the HD gene. Her test came back negative and their immediate family cycle will be broken because she is an only child. This will not stop Kaytrin as she wants to continue to help the HD Community anyway that she can.

In the spring/ summer of 2017, Kaytrin created the HD Blue Hose Challenge and enjoyed watching many thousands of families on social media post and take the challenge in their own way and have fun and bring smiles and awareness to the Huntington’s community. #HDBlueHoseChallenge The slogan was “Put on your blue clothes and get sprayed with a hose to raise awareness for Huntington’s disease”. She wanted to make it fun and easy for those who needed to be uplifted and simple enough.

On December 4th, 2019, Eric Orel passed away due to complications from HD. 

“We fight on for her dad and all our HD family members who may not be ready to face the fight,” said Bobbi. “I know HD is a personal choice but we are always on board for spreading awareness. We love our HD family. Family is everything.”

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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 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