Transforming Spaces, Touching Lives: How a Family’s Journey with Duchenne Muscular Dystrophy Inspired a Heartwarming Home Makeover on ‘This Old House’

The image shows a close-up of a person's hand gripping a blue grab bar in a bathroom.  The grab bar is mounted on a white tiled wall, next to a silver shower unit with a chrome finish.  There is a shower hose attached to the unit and, below the grab bar, there is a recessed niche in the wall that contains a soap dish with a bar of soap.

Key points:

The family’s challenge: adapting their home to the mobility needs of their son Caffrey due to Duchenne muscular dystrophy.
Renovation goals: Focus on accessibility, including an elevator, hydrotherapy pool, and smart home features.
Awareness and advocacy: Raise awareness about rare diseases and the costs of accessibility.
Benefits of television production: The efficiency and exposure that “This Old House” provided in completing the project.

Michelle Werner and William Lester, driven by the needs of their 13-year-old son Caffrey, who suffers Duchenne muscular dystrophy, embarked on a major renovation of their mid-century modern home in Lexington, Massachusetts. Featured in “This Old House,” the project was not just about aesthetics but, fundamentally, about making their home more accessible for Caffrey, who struggles with mobility and is expected to need a wheelchair in the near future. The family’s story began with a response to a Facebook post seeking a home renovation project for the show, which led to their selection for the transformation.

The renovation focused on customizing the home to meet Caffrey’s specific needs. Key features included an accessible entrance with a covered ramp, flush thresholds, an open-plan kitchen, ground-floor bedrooms, wide doors, automatic taps, accessible cabinets, a hydrotherapy pool and even an elevator. The design by architect Sandra Jahnes and consultant Jackie Dobson was intended to ensure that Caffrey could navigate the house independently without feeling isolated. Beyond the physical modifications, the project also served to raise awareness about the challenges and costs associated with making a home accessible to people with mobility issues.

The image shows a family of five outside their house.  From left to right is Caffrey, 13 years old, a young man wearing a black jacket and jeans, with a cheerful expression.  Next to him is Marlowe, 11, with shoulder-length hair, dressed in a black sweater and light gray sweatpants, smiling at the camera.  Behind her is Michelle Werner, dressed in a green sweater and jeans, and next to her is Wix, 16, a teenager who is standing next to her, dressed in a gray sweater and dark jeans.  On the far left, Billy Lester, a tall man in a black shirt and jeans, stands with a satisfied smile.  They are perched in front of a house with a large window and a brick exterior, with dormant bushes and a clear sky suggesting a cool season.
The family: from left, Caffrey, 13 years old; Billy Lester Marlowe, 11 years old; Michelle Werner; and Wix, 16.

Werner, a biotech executive specializing in rare diseases, and Lester, who runs a rare disease nonprofit, were well aware of the high cost of such accessibility modifications. They pointed to the prohibitive expenses many families face, such as specialized wheelchairs and home adaptations. This aspect of their journey was also highlighted at the show, underscoring the financial and logistical challenges of creating an accessible living environment.

The experience with “This Old House” was exceptionally beneficial, offering efficiency and predictability due to tight television production schedules. The exhibition not only documented the transformation of the house, but also contributed to broader debates about rare diseases and the importance of accessibility in housing design. The Werner-Lester family plans to expand their advocacy efforts by hosting a charity event at their newly renovated home, with proceeds benefiting Rare Disease Renegades, illustrating their commitment to supporting others facing similar challenges.

The current season of This Old House is underway and you can watch all the episodes on their website. Get started with the first one right here!

Key Features of this Remodeled Home

  • Improved entry: Covered ramp for easy access to the front door.
  • Download thresholds: Barrier-free transition at all exterior doors.
  • Accessible outdoor space: Smooth and flat surface for easy navigation.
  • Hydrotherapy pool: Outdoor pool with elevation system for exercise and therapy.
  • Expanded kitchen: Full access to all appliances.
  • accessible bathroom: Shower without curb and grab bars for independence.
  • New master suite: Parents approach Caffrey for support.
  • Elevator access: Easy trip to lower level family area.
  • smart home technology: Smart switches, automatic lighting and motorized doors for safe navigation.

Fountain: The Lexington Observer, this old house, this old house (Paid via Apple News+ but has interesting details like design diagrams and considerations)

This blog was written primarily using chatGPT, a potential tool for greater accessibility. Do you think this is an appropriate use of chatGPT? Why or why not? Let me know!

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