Community pitches in to build house for 23-year-old with muscular dystrophy

Staff photo by Sabrina Bodon / The Tunnel Hill property that a neighbor donated for the Wares to build their son a house.
Staff photo by Sabrina Bodon / The Tunnel Hill property that a neighbor donated for the Wares to build their son a house.

Sitting at the dining room table, Alex Ware asks his father, Nick, to draw a new door into the floor plan. Alex's family is building the 23-year-old a house so he can finally have the life he wants, one of independence, and that door is key.

Alex has Duchenne muscular dystrophy, a disorder which restricts the movement in his arms and legs. He's used a wheelchair for most of his life but became completely wheelchair-dependent at age 16. Finding a wheelchair-accessible home or apartment that was close to his family's Tunnel Hill home and which fit into his fixed income presented a challenge.

"I was ready to get out and do my own thing when I was his age," Nick Ware said. He wanted to pass that independence on to his oldest son, "but the world isn't built for people with disabilities."

Nick and Kristi Ware began helping Alex search for a house of his own about two years ago. They looked at foreclosures and apartments within a three-mile radius, but those kept falling through or weren't fully accessible.

photo Staff photo by Sabrina Bodon / Nick Ware shows the property where he is planning to build his son a house. Community members and companies like Imperial Landscape and Pioneer Technology have donated time or helped with construction.

"We stepped away for a few months and said, 'Lord, if you want us to have a house, you're going to have to drop it in our laps,'" Kristi said with a laugh.

Last December, a neighbor offered three acres of land for the Wares to build Alex a house. The best part? His future doorstep is less than a minute's walk from his parents' home.

While Alex was a student at Heritage High School, he took architectural classes which taught him the ins and outs of computer-aided drafting software. With this knowledge, he's now designing his future two-story home.

The house will have the aesthetic of a hybrid barn/cabin, he said. The first floor will be where Alex lives. It will feature a kitchen, a master bedroom with en suite bathroom, and a second, smaller room that could serve as his entertainment room. The second floor will be for a live-in caretaker, somebody who can help Alex with getting in and out of his wheelchair and making it to appointments.

The hallways will have cutouts so his wheelchair can swivel around the corners. The doors will slide instead of taking up space when opened. And Alex's dad, who works in the technology sector, is going to embed the house with smart technology that could control the lights and doors.

While largely customized to his needs, Alex said he's designing the house with the intention that somebody else will live there someday. The life expectancy for men with muscular dystrophy is early 30s, according to the Muscular Dystrophy Association.

"If I can make someone else's life easier or happier or more comfortable by doing that, then I will gladly share anything that I have to make that happen," he said. "This would be the greatest and most encouraging gift to someone whenever I pass."

But for now, he's focusing on the progress being made toward his dream. Nick Ware has started a "Welcome Home, Alex!" Facebook group that has grown to over 300 members. He shares daily progress updates and sells shirts with a logo of what the house will hopefully look like, to help fund the build.

photo Staff photo by Sabrina Bodon / Alex Ware works on the design of the house his family and community members are helping him to build. It will be a two-story home that will be fully accessible to those with wheelchairs.

Community members have shown up to help by the truckload to help, the family said. People have donated gravel for the 900-foot driveway they need to pave, cut down trees on the property, lent equipment like a small bulldozer, and helped to clean up debris. Those interested in helping with the project can contact the family on Facebook at "Welcome Home, Alex! Construction Project."

Another way the community can help is coming up Saturday, Oct. 12 from 4-7 p.m., when the Modern Woodmen of America is sponsoring a barbecue dinner at Keith Baptist Church in Tunnel Hill.

"We did have moments where we did think this is just not going to happen," said Alex. "But then [we'd get] encouragement and we'd be back on track. And we continue forward."

Email Sabrina Bodon at sbodon@timesfreepress.com.

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