Building a Home for Bennett

WTAE-TV Pittsburgh Action News 4 anchor Kelly Frey Luhn and her husband renovated their older home, creating the perfect space for their son, Bennett, who was born with special needs. Today, the West End structure is outfitted in a way that works for their family, and they intend to stay there forever.

photos by cory morton

 

About a decade ago, WTAE-TV news anchor Kelly Frey Luhn fell in love — not with her husband (she had fallen for him several years before) but with a quirky, 1890s-era house clinging to a hillside on Pittsburgh’s West End that came with a breathtaking, unobstructed view of the city’s inimitable skyline.
“We really feel like this is our house to share with others, to share this view of Pittsburgh with others,” she says.

As do-it-yourself types, Kelly and her husband, Lt. Colonel Jason Luhn, a pilot with the 171st Air Refueling Wing — the Air National Guard Unit located in Coraopolis — purchased the well-loved Victorian. They made plans to add modern touches that reflected their tastes. Then Bennett came along, and everything — everything — changed.
 

 

Kelly isn’t shy about sharing Bennett’s story, so many viewers of WTAE know that Bennett was born with Dandy-Walker syndrome, a congenital brain malformation, and hydrocephalus. The effects of Dandy-Walker can vary; Bennett was born with a severe brain malformation in which fluid doesn’t drain efficiently from one of his brain ventricles. 

Kelly says Bennett was born with virtually no cerebellum, the area of the brain that controls gross and fine motor skills. His brain stem is compromised as a result of fluid filling up and putting pressure on his brain in utero. In addition, Bennett has gray matter migration, which means part of the outer gray coating of his cortex migrated into the white matter. 

The combined effect of these conditions causes Bennett, now age 6, to have seizures, as well as major physical and cognitive developmental delays. 

When Kelly was 13 weeks into her pregnancy, doctors told the couple they did not expect Bennett to live past birth. They urged Kelly and Jason to terminate the pregnancy. 

“We were devastated and so grief-stricken. It was the most heartbreaking news we had ever been given,” Kelly says. “We wanted this child desperately but didn’t know what to do.”

The couple made the tough decision to end the pregnancy, but prayed for a sign to change their minds if that was the wrong choice. The day before the procedure was to take place, their medical insurance carrier informed them that it would not cover the termination unless the mother’s life was at risk. Kelly says she and Jason at first reacted to the news with shock and anger. 

“We had just gone on such a grief-stricken roller coaster trying to prepare ourselves to say goodbye to this child and (we) were in turmoil,” she says. “But then we realized that call meant we were supposed to carry this child to term and trust in what would happen.”

Born by cesarean section at 35 weeks, Bennett underwent brain surgery less than 24 hours after he took his first, unexpected breaths. Believing that they would say goodbye to Bennett at birth, the new parents arranged for a photographer from the nonprofit organization Now I Lay Me Down to Sleep to memorialize Bennett’s first and last moments with his family. 

Instead, the photographer captured the joy and awe on their faces as Bennett entered the world, stronger and healthier than doctors predicted. For the Luhns, his birth was nothing short of a miracle.
 

“There wasn’t a dry eye in the operating room,” Kelly recalls.

For the next few years, Bennett’s surgeries, frequent hospital visits and ambulance runs occupied much of the Luhns’ time. In the whirlwind of day-to-day living, their plans for their house were forgotten.

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.

The couple looked into buying a ranch home in the suburbs, a home with a first-floor bedroom suite or building a new house. But nothing compared to the home they already owned. As Kelly puts it, she and Jason always have been “city-dwellers.”

“We’d literally come home to our crazy house on the hillside that’s totally ramshackle and overwhelming, with so much to do at the time, and say, ‘This just feels like home,’” Kelly says. “We don’t want to leave our home.”

The Luhns decided to stay, and in doing so, they committed to modifying and making the house accessible for Bennett’s long-term future. Getting there wouldn’t be easy — or cheap.
 

 

Building for Bennett

Among the considerations was adding an elevator to the second floor. They ruled out a chair lift because Bennett couldn’t sit in it unaided, and it wouldn’t fit in the narrow, steep staircase. Also on the agenda: widening all doorways and hallways to admit Bennett’s wheelchair and creating accessible bathrooms.

“All of these things were totally overwhelming,” Kelly says. For two years, Kelly did what skilled reporters do best — she researched. She soon learned that, although there was some grant funding available for equipment, there was little money for construction. Much of the approval process also is income-based, she says.

The family, which by this time included daughter Marena, now 4, toured homes designed or adapted for other families with special-needs children to gather ideas. They began to put together a plan to expand their home in a way that would work best for Bennett.

“I just started Googling and researching, looking for grant money,” Kelly says. “It was constant and it was laborious, and there was no easy way around it.”

Through research, the couple found Venetia-based Prime 1 Builders, which among its services, specializes in accessible living and aging-in-place design for those who want to stay in their homes as they grow older.

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.

From the beginning, Prime 1 owner Dan Meade took a special interest in the project, especially as he worked with Jason, Kelly and their family.

“Once I met them, I knew it was going to be an interesting project, speaking as a builder, but I also knew it was going to be a worthwhile project because of the catalyst behind it,” he says.
 

 

Breaking New Ground

Through Dollar Bank, the Luhns took out what Kelly describes as a “hefty” construction loan of more than $200,000. On Jan. 14, 2015, they broke ground on the project. Kelly documented the process on her popular Building for Bennett Facebook page, which at times also serves as an outlet for the Luhns’ highs, lows and in-betweens as they care for their son.

“Everyone saw the photos of us breaking ground, but what they didn’t see was the two years of work that led up to that day,” Kelly says. “It was monumental.”
What followed was eight months of hard labor as Prime 1 constructed a two-story, 1,700-square-foot, wheelchair-accessible addition that included a spacious family room, a second-floor bedroom and handicap bathroom for Bennett, and a carport. Among the changes to the exterior were a sleek wheelchair ramp leading to the front entrance and revamped wraparound balconies designed to maximize the stunning view of downtown.
 

Later, the couple turned their steep, gravel driveway into a wide concrete passage with radiant-heated sidewalks and a ramp, eliminating difficulties with maneuvering Bennett’s wheelchair — particularly as he got on and off the school bus that transports him to the Pittsburgh Public Schools’ Pioneer Education Center in Brookline.

Kelly says workers came in and out of the house constantly, which wasn’t a big deal for a family used to having an army of nurses and therapists involved in their everyday home life. As they do with anyone who visits their home, the Luhns simply treated the workers as though they were family.  

“Those guys were living in our house,” Kelly says. “We’d bring them coffee in winter and fudge Popsicles in the summer months. My daughter would take stuff out to them.”
 

Every step of the construction chaos — at one point Marena slept on a mattress in her parents’ bedroom — and all of the dust that came with it brought them closer to their goal of having a house tailored to Bennett’s needs.

“That put everything in perspective,” Kelly says. “We weren’t just doing it because we wanted to have a pretty house. We’re doing it because we’re going to live here forever with him.”

Architect Ken Kulak of Kulak Design Associates, who through Accessible Dreams helped to design the renovations while he worked at CM Services, says one of the most challenging aspects of the project involved creating space in an older home with a layout that was not conducive for wheelchair use.

“The homes then weren’t really designed for a person with accessible issues,” says Kulak, whose company is based in Monongahela. “For Kelly, she had specific needs in dealing with Bennett’s condition as he began to get older and bigger and heavier. What she was able to do with him as a small child or infant, she could no longer do.”

Other challenges came in the form of 16-degree weather during winter demolition and the kind of surprises that tend to accompany renovation of an older home, including layers of coal dust found behind century-old plaster walls and the discovery of a 100-plus-year-old underground cistern where a new foundation needed to be poured.

Prepping Bennett’s room for his needs included adding a ceiling lift over his bed. The lift powers Bennett safely to and from his bed as he grows too heavy to carry and also can move him to his adjoining bathroom. As do all rooms in the house now, the bath includes a wide doorway for a wheelchair.
 

There’s also a shower with no threshold, radiant-heat flooring and a claw-foot tub — which came with the house — outfitted with a built-in, hydraulic lift chair. Other amenities are a touch-sensor faucet and a toilet that someday will be replaced by a bidet (jokingly called a “booty wash” by Kelly) for Bennett’s future use. Kelly says she hopes to work on toilet-training Bennett, who for now wears diapers.

Often, the news anchor will find herself scrubbing Bennett, Marena and (unintentionally) herself at the same time in the spacious bathroom.  

“If could have made the bathroom even bigger I would have,” she says. “You’re just going to get wet when you’re showering someone who can’t shower himself.”

In the older part of the house, the Luhns reconfigured the dining room and kitchen and added white, high-gloss cabinetry from IKEA. A handyman at heart, Jason did much of the work himself between military deployments. He also designed the cabana-like pool area, which includes a pool house and outdoor kitchen.

Thanks to Jason’s understanding of construction plus the couple’s shared love of design (Kelly is a confessed Houzz junkie), Kulak says it was a delight working with the Luhns.

“Between the two of them, their [contemporary taste] is wonderful,” he says. “I had to help them very little. They knew what they wanted. I didn’t have to hold their hand with anything.”
 

 

Building Bennett’s Room

Special care went into constructing Bennett’s room, which addresses his needs while honoring his family’s roots.

• Make-A-Wish decked out Bennett's ceiling with vinyl wrap of a B-24 bomber, the same type of plane Bennett’s great-grandfather flew in World War II.
   
• Jason and Kelly occasionally sleep in the trundle bed if Bennett is having a bad night.
   
• The ceiling fan above Bennett’s bed is designed to resemble a plane propeller.
   
• Make-A-Wish also provided Bennett with a “Chill-Out Chair,” a supportive foam lounge chair, and a colorful bubble tube that is beloved by Bennett and the family dog, Knox.
   
• Bennett sleeps with cameras over his bed so the Luhns can check throughout the night to make sure he’s not having a silent seizure. The cameras feed into a mirrored television in the Luhns’ bedroom, and they also can tap into the feed through their phones.
   
• Bennett rests in a Safety Sleeper placed over a trundle bed. Resembling a tent, the mesh-enclosed bed prevents Bennett from falling out at night. It’s also portable.
   

Beauty and Function

Among Kelly’s greatest desires was to create a home with “quiet accessibility,” meaning a home that is functional for their needs yet still beautiful. Meade says getting there took a team effort, and he jokes that just keeping up with the high-energy Kelly was a challenge in itself.

“I think that Kelly’s constant directive was: keep it from looking like an institutional accessible addition, and everything does blend in well,” Meade says. “The bedroom and bathroom don’t have the look of a stereotypical accessible bedroom or bathroom.”

Kelly acknowledges she likely drove the builders crazy at times as she came up with new ideas, such as when — in a stroke of genius — she decided to add non-opening windows to the elevator shaft, which has a view of the city, to make it less claustrophobic.

“I was always like, ‘Can we do this, this, this and this,’” she laughs. “Jason and I are definitely homeowners who are involved, and we’re do-it-yourselfers, which is a blessing and a curse, and we know that.”
 

 

A Welcome Home

The Luhns had good reason to push the construction. They had a goal of opening their house to the public — and particularly other people with disabilities — in October as part of the Builders Association of Metropolitan Pittsburgh Festival of Homes tour. Kelly invited the vendors who worked on their home to be part of the open house. She says her vision for the Building for Bennett project always has been for the home to serve as a clearinghouse for families looking to adapt a home or build a new accessible home — whatever their budget and needs.    

“That was our dream to be able to open it up and have everyone come in to see it,” she says. “We just wanted that open house to be a service for all the parents coming through.”
 

To the Luhns’ delight, the open house attracted more than 400 people during two weekends, including many families with special needs. There even was a wheelchair-accessible bus to shuttle visitors back and forth between the house and the designated parking area.

“To see all these moms and dads, it just gets your adrenaline going,” Kelly says of meeting with other families who toured the house. “It makes you want to do even more.”

Kelly says she hopes to participate in future tours as well. Jason even has talked of having “wheelchair fireworks” on the Fourth of July at their home so that everyone who participated in their open house can have a comfortable, wheelchair-accessible space to enjoy the city’s fireworks display.

Because it’s often difficult to take Bennett out, Kelly adds she and Jason wanted to make their home a welcoming place for their son — and for everyone else.

“This is the place that everybody knows they can come to.”