Scott Porter Calls Wife Kelsey ‘Superwoman’ amid Huntington’s Disease (Exclusive)

In 2013, Scott Porter was celebrating the Christmas holiday with his in-laws. The Ginny & Georgia star and his wife Kelsey Mayfield Porter were newlyweds and excited to start discussing a timeline for having children with her parents.

Instead, that conversation consisted of the couple learning that Kelsey’s mother was diagnosed with Huntington’s disease.

“That was definitely a moment of complete change, as far as the trajectory of my wife’s and my relationship,” Porter tells PEOPLE. 

Huntington’s disease (HD) is a genetic neurological condition in which the cells in the brain break down over time, according to the Cleveland Clinic. Symptoms — which typically begin between the ages of 30 and 50 — include uncontrollable movements, loss of coordination, trouble walking, slurred speech, difficulty with memory or focus, trouble learning new information, mood swings or depression, and more.

“It can really tear through families very quickly,” the actor says of the disease.

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Because HD is genetic, each child of a parent with the condition has a 50% chance of inheriting the gene.

“People who find Huntington’s disease is in their family have a choice to make: get tested or not get tested,” Porter, 45, explains. “Live your life not knowing or live your life knowing that you possibly have a neurodegenerative disease that could take your mind, your body, your balance, your moods, and turn them into something completely different than you are now.”

“There is no right or wrong way to go about things,” he adds.

For Kelsey, she knew immediately that she wanted to get tested. Her first thought was her desire to have kids, and the possibility of not having as much time with them.

“My wife said the words to me: ‘I want to be a mother as long as possible.’ And that was the impetus for her wanting to get tested,” Porter says. “So for her, it was the right thing. And as her husband, I was so incredibly supportive of that.” 

Kelsey went to UCLA Health to get tested and after a couple weeks, she learned in early 2014 that she was positive for the HD gene.

“The moments immediately after her positive test were silent,” Porter recalls. “She looked at me and she said, ‘50/50 chance. It was a coin flip and it came up tails.’” 

“And that moment could have put her into a place where any number of things could have happened. A lot of people who are battling HD have different forms of mental illness that they develop because of it,” he says. “But somehow Kelsey’s unique focus on wanting to start a family kept driving her effervescence, her refusal to be unhappy and her strength to not allow the HD diagnosis to dictate her every day.”

From that point, Porter and Kelsey began their journey to start a family. The couple pursued IVF with preimplantation genetic diagnosis (PGD) to ensure that their children would not inherit HD. They later successfully welcomed two children — son McCoy in 2015 and daughter Clover in 2017 — who are not at risk.

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Porter admits that although Kelsey has not yet been significantly impacted by the disease, seeing the effects it’s had on his mother-in-law can be jarring when thinking about his wife’s future. However, he’s constantly in awe of how she’s maintained high spirits about her life ahead.

“In families who have HD, most of them have an older family member who is symptomatic and you can see what could and will be your future if we don’t find a cure,” he shares. “Every instance like this is an opportunity to respond with fear or with empathy, to respond by letting it break you down or allowing it to help build yourself up.”

“My wife is the single most determined, most capable woman that you will ever meet,” he boasts. “All of her friends call her Superwoman. She is just an incredible human being. And when I first met her, on her Facebook profile, it said, ‘I refuse to live any day unhappy.’ And that’s the type of person Kelsey is so I knew how she was going to respond.” 

Porter tells PEOPLE that one way he and his wife cope with the lingering HD diagnosis is by getting involved in advocacy work with the Huntington’s Disease Society of America (HDSA).

“Over my time with them, we’ve raised over $2 million to try and find a cure and to support families with HD,” he says.

“The future of families with Huntington’s disease is unknown as far as medications or therapies. Is there a cure? Not right now, but there are a lot of positive steps being made,” he continues. “Gene therapy is now being explored. We have a phase two trial of a drug that’s trying to limit the amount of the Huntington’s protein that is produced in the human body. A lot of positive strides. And I have nothing but hope for the future of families like mine who are battling Huntington’s disease.” 

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The Friday Night Lights alum encouraged those navigating the disease to join the therapy groups the HDSA offers.

“I just want everybody out there who is battling this to know you’re not alone,” he says. “We are here. We are fighting alongside you, we are fighting for you, we are supporting you.”

As the couple continues to raise awareness, Porter stresses that Kelsey has a “flat out refusal to allow Huntington’s disease to govern her life now,” so they practice living their lives normally and staying in the moment. 

“Our life is our life,” he tells PEOPLE. “I don’t know how my wife lives every day knowing that eventually, unless we find a cure, she could have more of these symptoms of HD without it letting kind of take the ground out from underneath her feet.”

“Day by day, she just says, ‘This is not who I am. A diagnosis does not dictate who I am as a person, as a mother, as a wife, as a friend.’ So it’s just really remarkable to stand by her side.”