When her husband began showing signs of memory loss, Gail Shurlow ran.

Not to run away, but to raise awareness to help find a cure for the family she loves.

Don Shurlow had Huntington’s disease, a fatal genetic disorder.

Three of her adult children have also tested positive for Huntington’s disease, so Gail and others continue the race to beat this deadly disease.

Gail ran the New York City Marathon in 2017 while raising $13,500 for Huntington’s disease research, and she and her son Kevin are training to run the Chicago Marathon in October.

‘I have to do something’

Doctors diagnosed Don in February of 2009 at 49 years old, after he showed cognitive decline while running his family trucking business—Don Shurlow Trucking.

His memory was starting to fail. Huntington’s disease causes the progressive breakdown of nerve cells in the brain.

“The minute I found out he had (it), I said I will do things to raise money and awareness,” she said. “I thought ‘I have to do something.’ I knew I probably had children who would test positive.”

“I watched Don run a trucking company with 40 trucks, remembering every driver’s phone number and their location in his mind, to not being able to figure out how to make a phone call or being able to sort out the day’s events without it being written down for him,” Gail said.

Huntington’s disease symptoms usually start between the ages of 30 and 50 and slowly progress over the next 10 to 20 years.

Kathleen Delp, LMSW, CGC, a genetic counselor at Spectrum Health Medical Genetics who works with the Shurlow family, said no two cases are the same.

“When you’ve seen one patient with Huntington’s, you’ve seen one patient with Huntington’s,” she quipped, citing a common saying among her peers.

Symptoms include diminishing cognitive function, declining motor skills and psychological effects. It’s been described as having ALS, Parkinson’s and Alzheimer’s simultaneously. There is no cure.

The Shurlow children, Kevin, 29, Erin, 27, and twins Maddie and Nate, 23, were in high school and junior high when they learned of their father’s diagnosis.

“We just tried to keep things as normal as possible,” Gail said. “He knew there would be no cure, that he wasn’t going to get better. He was able to tell the kids, ‘I know I’m going to go—and I’m ready—and I want you guys to be ready to let me go.’”

Don’s physical decline started in 2016 after two hospitalizations, one for a skin infection and another for a difficult gallbladder surgery.

Running with a passion

Gail started running when the children left the house years earlier but had never gone beyond a 5K. With Don in failing health, she felt inspired to do more.

When she saw information about how to raise money and awareness for Huntington’s disease while competing in a marathon, she felt motivated.

“I thought, ‘If I can get in this and finish a whole marathon and raise money for this, it would be a good example for my family and my kids that you can do anything you set your mind to,’” she said.

She applied to run in the New York City Marathon in 2016, but all the Huntington’s disease fundraising slots were filled through the Huntington’s Disease Society of America. Disappointed, but not deterred, she applied again in 2017 and made the cut. She pledged to raise at least $3,500 for the society to go toward research and resources.

She raised $10,000 more than that, for a total of $13,500. About half of that came when the Lakeview community came together that summer for a pig roast fundraising event.

Gail set a goal to complete the race in less than five hours. She made it with less than a minute to spare, finishing in 4.59.18.

She didn’t compete the following year as Don’s health continued to decline. He passed away Oct. 18, 2018, at age 58.

“Even though I lost my father at a pretty young age, I was fortunate to see my dad live his life to the fullest,” Kevin said. “And even though he had 58 years, he had a great time and he enjoyed life. My view is it really doesn’t matter how long we’re around, as long as we continue to live with a positive mindset and do things we enjoy.”

Since Don’s death, Kevin, along with his two sisters, have also tested positive for Huntington’s disease. They currently have no symptoms.

Living positive

Gail said her family chooses to live positively despite Huntington’s disease in their family tree. Don’s mother had Huntington’s disease, as did two of his three siblings.

“Within our family we do talk about Huntington’s, but we don’t obsess over it,” Gail said. “We focus on living our life now and planning for our future with a positive outlook and hope. Whether it’s Huntington’s or something else such as cancer, every family has a story, you have to find something to keep your family positive.”

Kevin said his mother leads that charge.

“She’s incredible,” he said. “She’s definitely our biggest supporter and somebody for us to look up to as a family.”

Gail works as an emergency department nurse at Spectrum Health Kelsey Hospital in Lakeview. She said creating awareness is important.

“Knowledge is power,” she said. “The more you know about what you’re up against, the better you are to fight against it and stay positive. I think it’s better to face it and be positive about it and to raise awareness.”

Her newfound purpose and passion for running has inspired Kevin to do the same.

“Since being diagnosed, I have found a new motivation to do things like this while I still can,” he said. “I’m honored to do this for myself and others who aren’t necessarily able to. I think it’s awesome to raise money for Huntington’s while also doing something I’ve found a new joy in.”

Kevin, who married in December, has a new appreciation for running and his goal for the Chicago marathon is simply to finish.

“My new joy in running comes from testing positive,” he said. “I appreciate the fact that I’m still able to run. As I run farther and farther, it gives me a sense of hope and happiness just knowing that I’m still able to do this. It’s about raising money for Huntington’s and awareness and hoping for a cure one day.”

Watching his father go through Huntington’s disease, Kevin understands how precious time is.

“I think I’m fortunate that I know my future a little bit because it really makes me enjoy the things I want to enjoy as I have an outlook on what my life might be later on,” he said.

A shining example

Kevin and Gail have already met their fundraising goal for the Chicago Marathon, which is set for Oct. 11, almost exactly two years since Don’s death.

Delp said the Shurlow family is a shining example of staying positive despite the disease.

“The Shurlows are a resilient family,” Delp said. “They are courageous and strong. They have been instrumental in being role models in how to handle getting devastating news about a positive test result well before showing any symptoms.”

“Living positive” is also a play on words for a support group in Grand Rapids facilitated by Delp, who has been a Huntington’s disease counselor and advocate for 25 years.

The support group meets monthly to share resources and support for those who have tested positive or are at risk of being positive and for caregivers, parents, siblings and friends.

The Huntington’s Disease Society of America also hosts Team Hope Walks across the country to raise money and awareness. The West Michigan event is Aug. 22 in Holland.

“I definitely didn’t think this would be my life when I got married, but it is,” Gail, 52, said. “For some reason God sent me this—and you decide how you’re going to deal with it.”

She wants to run the New York City Marathon again at 55 and again when she’s 60, hopefully with some of her children.

“I plan to keep doing the marathons,” she said. “It’s because I’m selfish, I want a cure. That’s my goal. If there’s anything I can do to get it here, I will do it.”