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Meet the Newcome Family

Lori Newcome didn’t know about Huntington’s Disease until her father-in-law was diagnosed when she was a teenager.

The genetic disease affects one in 10,000 Americans, according to the Huntington’s Disease Society of America. It damages brain cells and involves a variety of physical and emotional symptoms as it slowly progresses.

Four years ago, Lori's husband, Brian, began acting differently and was forced

Lori Newcome didn’t know about Huntington’s Disease until her father-in-law was diagnosed when she was a teenager.

The genetic disease affects one in 10,000 Americans, according to the Huntington’s Disease Society of America. It damages brain cells and involves a variety of physical and emotional symptoms as it slowly progresses.

Four years ago, Lori's husband, Brian, began acting differently and was forced to stop working. Tests found he had Huntington’s Disease.

Welcome to Orlando

Welcome to Orlando

“It’s one of those things you never think about until it happens to you,” Lori said.

Lori found Inheritance of Hope Legacy Retreats® online and was initially unsure if her family could attend. She worried that Brian’s gradual illness would distance the Newcomes from other families at the retreat with more urgent diagnoses. IoH staff encouraged the Newcomes to attend, and Lori, Brian, and their daughters, Brittanie and Brooke, were welcomed at the 2011 Legacy Retreat® at Disney World.

“They took the time to really get to know us individually, and that was important,” Lori said.

Happy Birthday, Brittanie!

Happy Birthday, Brittanie!

The Newcomes' church sent the family letters when they arrived in Orlando, and IoH volunteers threw a party for Brittanie’s 21st birthday during the retreat. Brian and Lori also made connections in group counseling sessions.

“What really stands out to me is how we related to the other families,” Lori said. “Everybody was in different situations, but everybody still had the same feelings and the same fears.”

Lori and Brian

Lori and Brian

Brian’s health allowed him to participate fully. He didn’t appear sick and was able to keep up with the Legacy Retreat® activities.

“I think he just felt a sense of comfort knowing that there are other people out there with the same hopes and fears,” Lori said.

The Newcomes hadn’t considered the importance of making memories due to the slow progression of Brian’s illness, but the family learned to make intentional memories at the IoH retreat.

“We make little videos now and then so the girls remember their dad and remember how he is,” Lori said.

Brian’s condition has gradually declined over the two years since the retreat. He struggles to answer questions and moves more slowly. Lori said their 13-year-old daughter, Brooke, doesn’t remember what her father was like before Huntington’s Disease.

There is no treatment for Huntington’s Disease, but the Newcomes travel from West Virginia to Baltimore twice each year to update Brian’s health. They also enroll in clinical trials to help other people with the illness. Lori said she, Brian, and their daughters watch message boards for news from the families who shared their Inheritance of Hope experience.

“The Legacy Retreat® was a blessing to my family. It was wonderful to meet everyone.”