In December of last year, a message appeared on the Lexington Mavens, a Facebook group where local women share things like gardening tips, missing pet notices, and recommendations for math tutors or podiatrists.
“Mavens, a friend of mine is a producer on This Old House and they’re looking for their next project!” the message read. “They’re looking to document a whole house renovation starting in early spring in the greater Boston area.”
Michelle Werner was intrigued. She and her husband, William Lester, had recently purchased one of Lexington’s coveted mid-century modern homes, which they intended to renovate. Over the years, the original, glassy 1960s architecture had become obscured by a mismatched addition with vinyl siding and an overly-prominent 3-car garage.
But the family’s renovation plans were more than just aesthetic. Three years ago, on his 10th birthday, their son Caffrey was diagnosed with Duchenne muscular dystrophy, a rare genetic disorder that leads to progressive muscle degeneration, and is eventually fatal. Caffrey, now 13, still has the ability to walk, but can no longer climb stairs. The family expects that he’ll need a wheelchair within the next year or two.
After the diagnosis “you can imagine — it was a period of reflection for all of us,” Werner said. A pharmaceutical development executive who had worked mostly on cancer treatments, Werner decided to shift her focus to rare diseases. “I’m in drug development, so I looked for what’s the latest and greatest work on this disease,” she said. “The reality was there were no clinical trials, the standard of care hasn’t changed in decades.” One reason, she said — “rare diseases don’t get nearly the attention that more common diseases do. Millions and millions of patients are being underserved.”
Werner took a new job at a biotech firm in Cambridge that researches tRNA therapies — a new kind of genetic medicine that could eventually help treat all sorts of genetic diseases. Lester became Caffrey’s primary caregiver, and the couple started a nonprofit, Rare Disease Renegades, which Lester runs. They moved their family from NJ to Lexington for Werner’s new job, and chose their new home, with its main living spaces all on one floor, with Caffrey in mind.
Werner responded to the Facebook post, not really expecting to hear back. Two days later, she got a call from Sara Ferguson, the producer for This Old House. She was intrigued by the both the architecture and the accessibility challenges. This Old House needed to get moving right away in order to meet their production schedule — and needed to work fast. This might have complicated matters for some families, but it was perfect for the Werner-Lester family, who were themselves eager to have the house ready for Caffrey as his needs change.
On a bright afternoon in early September, trucks and vans lined the street in front of the house. Jenn Nawada, the show’s landscape design expert, walked across the future patio while a cameraman trained his lens on her. Construction workers, producers and assistants danced around each other trying to do their jobs while staying out of the shot. They were shooting episode 9 of the 16-part series about the Lexington house, and Lester and Werner had offered to show me around.
We passed under a diagonal roof overhang, a classic feature of mid-century architecture that wasn’t original but had been added to accentuate the angular lines of the home. Inside, the house had been basically gutted and new spaces had been framed out — an open-plan kitchen and living area, adjacent ground-floor bedrooms for Caffrey and his parents, and extra-wide doorways between rooms.
“We don’t want him to feel isolated or treated differently,” Werner said. “It can be a very isolating thing, because you feel like the world isn’t designed for you.”
With the help of accessibility consultant Jackie Dobson, architect Sandra Jahnes of Ruhl | Jahnes in Watertown has designed the new house to include features like lower light switches, automatic faucets, accessible cabinets with touch-release doors and drawers — even an elevator to bring Caffrey to the rec room downstairs. There’s also a hydrotherapy pool, which is a great way for people with limited mobility to get some exercise.
In addition to raising awareness about rare diseases, Lester and Werner hope that the show can provide an example and inspiration for other people needing to remodel their homes to make them more accessible. But they also recognize that what they are able to do for Caffrey wouldn’t be possible for many people.
“Something we’ve become aware of throughout this journey is how expensive accessibility is,” Werner said. A device that lifts a person to bed or the toilet can cost more than $10,000 to install, Lester said. The latest custom power wheelchairs can cost around $30,000, and a minivan conversion to accommodate a wheelchair can cost $100,000. “We’re fortunate,” Werner said, “but it’s disheartening to think about how hard it is for others.”
This Old House doesn’t fund the renovations. Their job is basically to document and showcase the work. But they do require that participants use their regular general contractor, Charlie Silva, which turned out to be one of the greatest benefits to the Werner-Lester family. Construction work is notoriously slow and unpredictable, but television production is generally the opposite — schedules are tight and the show must be ready by the air date. “The experience of working with This Old House has been phenomenal,” Werner said. It’ll be less than a year from that initial post on Facebook to when the first episode airs on PBS on September 28th, and the entire project should be finished in time for the finale in February.
The house has other impressive features, including geothermal heating and solar electricity, but “there is an accessibility angle in every episode,” Ferguson said. “Caffrey is mentioned in every episode.”
Though Caffrey appears in the show, “he’s a reserved kind of kid, he doesn’t seek out the limelight,” Werner said, but “he’s excited about the house and excited to move in.”
Werner too is excited to move in, and excited to be living here in Lexington. “It’s inspiring to live here in the Boston area with so many biotech startups,” she said. Asked if she thinks the work that her company is doing could have an impact for Caffrey, “we have to be optimistic,” she said. “I do think we are living in an age where there is much more focus on genetic diseases than there has been. I’m optimistic that there are new innovations on the horizon. We are certainly in a race against time. But for future generations I believe we’ll be in a better place, and I’m optimistic that could also be true for our son.”
Tune in to This Old House: Lexington Modern on Sept 28 at 8:00 pm on GBH.
Lester and Werner will be hosting a charitable event at their house on October 26. Guests can check out the renovations and meet the cast of This Old House. All proceeds will benefit Rare Disease Renegades.