Family Caregiver of the Year Award Nominee: Kelly Frey


Family Caregiver of the Year Award Nominee: Kelly Frey

Nominated by: Carrie Butler

Tell us about the nominee's caregiving story.
As the mother of a special needs child who requires around-the-clock care, Kelly Frey and her family are no strangers to sacrifice. As a beloved news anchor on Pittsburgh’s WTAE-TV, Frey is also no stranger to the spotlight. But as a recent survivor of breast cancer, who candidly shared her journey through chemotherapy and remission with viewers and fans on social media, all while continuing to provide uninterrupted daily care for her son Bennett, Frey sets a powerful inspirational example for caregivers who strive to give their very best in every facet of their lives — and she does it all with an unbreakable spirit, unwavering faith, and an electric smile that energizes everyone she meets.

Frey’s son Bennett, who is now 9, was born with a severe case of Dandy-Walker — a congenital brain malformation — as well as hydrocephalus and epilepsy. The effects of Dandy-Walker can vary; Bennett was born with virtually no cerebellum, the area of the brain that controls gross and fine motor skills, and his brain stem is compromised as a result of fluid filling up in one of his brain ventricles but not draining efficiently. The combined effect of these conditions causes Bennett to have seizures, as well as major physical and cognitive developmental delays.

As a result, Frey and her husband Jason renovated their Victorian Pittsburgh home to accommodate Bennett’s needs so they can care for him in-house rather than outsourcing his care to a facility. The extensive renovations include a two-story, 1,700-square-foot wheelchair-accessible addition with an elevator, a spacious family room, a second-floor bedroom and a handicap bathroom for Bennett, as well as a portable mesh-enclosed Safety Sleeper bed that prevents Bennett from falling out at night, and cameras over his bed so the Luhns can check to make sure he’s not having a silent seizure.

“When you have a child with extra needs, it doesn’t end when you go to bed and you wake rested 8 hours later. You’ve already been up all night. It doesn’t stop so that you and your husband can go to dinner… ever. It doesn’t end so that you can focus on anything else in your life. You learn to absorb and adapt and function, unlike most people, will ever know,” Frey revealed in a Facebook post on the Building for Bennett page, where she often shares her experience in caring for her special needs child. The page is followed by over 16,000 people.

Despite her many hardships, Frey takes it all in stride. “Some days the pep’s not quite in her step, but you wouldn’t know that from watching her on TV at all,” says Frey’s longtime coworker and friend, WTAE assignment editor Peggie Kunicki. “She has always been genuine, kind and sweet. Everyone always asks me, ‘What’s Kelly really like? Does she treat others the way she treats people on TV?’ I tell them, ‘She’s even better.’”

Kelly Frey has been with WTAE since 2000. She lives in Pittsburgh with her husband, Jason, a Lt. Colonel in the Air National Guard and tanker pilot with the 171st Air Refueling Wing, and their children Bennett and Marena… plus two cats and a dog… and dozens of therapists and nurses who come and go each day, and whom Frey affectionately refers to as family.

How does the nominee complement his or her caregiving responsibilities with their own needs and interests?
Kelly is as integrated a part of the community in Pittsburgh as she can be. She loves her city and it loves her right back. There are endless examples of how she engages, cares for herself as much as she can, despite the rigors of caring for a disabled child, a young daughter, a full-time job and battling breast cancer.

Kelly takes pleasure in being open and engaged. And in the simple things: like eyelash extensions:

Tell us about the nominee's problem-solving techniques.

Their days are structured around their son’s care and their lives around his daily needs. They monitor medicine and constantly search for the latest equipment, treatment, and therapy. There are daily phone calls regarding insurance, or to reorder supplies, and there are many doctor appointments. All the while with the realization that they are just one seizure or sickness from another trip to the intensive care unit.

“This is the life of a parent who has a child with severe medical issues or extra physical needs,” she wrote. “It’s not easy. It will take you on the highest highs and then plummet you into the lowest lows. Sometimes all in one day.”

Kelly relies on strong faith. “And I know someday... someday... I will see my little boy restored,” Frey wrote. “Healthy. He will talk. He will walk... one day in heaven."

How does the nominee use online resources or community services?
One incredible example is the restoration of Kelly's 1890s-era home overlooking Pittsburgh high above the city's west end. As caring for Bennett became difficult as he grew, Kelly struggled with an imminent move.

As Bennett’s weight neared 30 pounds, though, carrying him up and down the home’s narrow staircase became harder for his parents and nurses. The Luhns turned their thoughts back to the house. Bennett was bound to grow heavier as he reached his teens and then adulthood. The Luhns began to give serious consideration to their future. Should they move? Go back to Florida where Jason grew up? Or perhaps consider the Philadelphia area, where Kelly’s parents still lived?

“That put an absolute panic in me,” says Kelly, who did not want to leave Bennett’s doctors, their proximity to Children’s Hospital of Pittsburgh of UPMC or the city they now called home.

Finding the right builder — and one that was willing to work within their budget as well as on their unique hillside property — was a huge asset for the Luhns, who pooled their savings to help to pay for the construction.

“This is going to be our home forever, and it’s a major commitment,” Kelly says. “(Bennett) will always live with us here. We don’t have money to do it a second time, so we have to do it right the first time.”

Prime 1 Builders introduced the couple to Accessible Dreams, a Washington County-based nonprofit organization dedicated to helping people with disabilities locate barrier-free homes. Through the organization, the Luhns secured a $10,000 grant from Achieva Family Trust toward the cost of installing an elevator. They also received a $3,000 grant to mount a ceiling lift in Bennett’s bedroom.

The results are incredible (see links)


How does the nominee remain involved in his or her community (including online)?
Taking WTAE viewers and online followers on her journey with Bennett, Frey was sensitive to how the public would react, worried she was oversharing. That was for naught. Those in the Pittsburgh area and beyond have professed overwhelming support for the news anchor. Frey has received thousands of well-wishes in person and via social media. When she has the time and energy, she tries to get back to every person who contacts her.

“I don’t ever want to be the public persona that people get tired of,” she says. “Like OK, she’s got a special-needs child. I don’t ever want to do that. I don’t want to ever feel like that. I don’t ever want to be pushing what’s going on in my life off on other people. I try to tread very lightly with that, and hopefully never be ... overbearing, maybe is the word.”

On social media, where she has a robust following, Frey strives to be honest and educational. Sometimes that also means being vulnerable.

Kelly Frey has 87,000+ followers on Facebook

and 16,700 followers on her Facebook page Building for Bennett

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