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Huntington’s Disease: A family’s journey of love and loss

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Huntington’s Disease (HD) affects somewhere around 200,000 people in the United States – and some may be from the same family, as in the case of the Shurlow family from Lakeview. In our original coverage, the family had shared touching photos captured of their patriarch, Don, and his daughter on her wedding day.

At the time, Don was battling HD, a genetically inherited disease that breaks down the body and the mind.

“It’s been said it’s like having Parkinson’s, Alzheimer’s and ALS all at the same time,” said Gail Shurlow, Don’s wife. “There’s no written book of how fast symptoms will progress.”

But for Don, Gail says it all happened quickly. He passed away in October of 2018, and since then, three of his four children that have gotten tested found out they also have Huntington’s.

“Each child of an affected parent has a 50% chance of inheriting the Huntington’s gene," Shurlow said. "That doesn’t mean that if you have four children, two have a chance of getting it. That means each child has a 50% chance that they will. Some days I do wonder why…why did we get this? But I know there’s a reason.”

The Shurlows seem to have already found the reason. Since Don’s passing, they’ve held talks on HD, Gail ran the New York City Marathon in 2017, and will run the Chicago Marathon with her son Kevin in the fall to do the same. They’ve helped raise thousands for a cure.

“This is our life, but there’s more beyond HD,” said Gail. “Do I think you should obsess over HD? No, I don’t think you should obsess. Do I think you should talk about it? Yes.”

For more information on HD or to help fundraise for a cure, Gail recommends checking out the Huntington’s Disease Society of America . You can donate to her Chicago Marathon fundraising page here .