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 setting. The grab bar is mounted on a white tiled wall, next to a silver shower unit that has 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:

Family’s Challenge: Adapting their home for son Caffrey’s mobility needs due to Duchenne muscular dystrophy.
Renovation Goals: Focus on accessibility, including an elevator, hydrotherapy pool, and smart home features.
Awareness and Advocacy:  Raising awareness about rare diseases and the costs of accessibility.
Benefits of Television Production: The efficiency and exposure provided by “This Old House” in completing the project.

Michelle Werner and William Lester, driven by the needs of their 13-year-old son Caffrey, who suffers from Duchenne muscular dystrophy, embarked on a major renovation of their mid-century modern home in Lexington, Massachusetts. Featured on “This Old House,” the project was not just about aesthetics but crucially 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, leading to their selection for the transformation.

The renovation focused on customizing the home to cater to Caffrey’s specific needs. Key features included an accessible entryway with a covered ramp, flush thresholds, an open-plan kitchen, ground-floor bedrooms, wide doorways, automatic faucets, accessible cabinets, a hydrotherapy pool, and even an elevator. The design by architect Sandra Jahnes and consultant Jackie Dobson aimed to ensure Caffrey could navigate the home independently without feeling isolated. Beyond the physical modifications, the project also served to raise awareness of the challenges and costs associated with making a home accessible for individuals with mobility issues.

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

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

The experience with “This Old House” was uniquely beneficial, offering efficiency and predictability due to the tight schedules of television production. The show not only documented the home’s transformation but also contributed to broader discussions about rare diseases and the importance of accessibility in home design. The Werner-Lester family plans to further their advocacy efforts by hosting a charitable 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 in progress and you can watch all the episodes on their website. Start with the first one right here!

Key Features of this Remodeled House

  • Improved Entryway: Covered ramp for easy front door access.
  • Flush Thresholds: Barrier-free transition at all exterior doors.
  • Accessible Outdoor Space: Smooth, flat surface for easy navigation.
  • Hydrotherapy Pool: Outdoor pool with lift system for exercise and therapy.
  • Expanded Kitchen: Full access to all appliances.
  • Accessible Bathroom: Curbless shower and grab bars for independence.
  • New Primary Suite: Parents closer to Caffrey for support.
  • Elevator Access: Easy travel to lower-level family area.
  • Smart Home Technology: Smart switches, automatic lighting, and motorized doors for safe navigation.

Source: The Lexington Observer, This Old House, This Old House (Paywalled through Apple News+ but has interesting details like design diagrams and considerations)

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

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