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Keeping Alex safe

April 12, 2018 — General

Alex’s mom, Barbara, is determined not to let anything hurt him.

But the way the family’s home is built means a constant risk of injury – either Alex, or to her. 

Understanding this unusual situation means grasping the family’s choices, Alex’s unique, challenging medical needs, and the physical limitations of the family’s immaculately-clean Aloha duplex.

Since he was born in 2001, Alex has needed constant medical intervention. He’s unable to walk or talk, has monitors and IV drips, and life-threatening allergies to alcohol, latex, milk, fragrances and more. He’s been diagnosed with scoliosis, epilepsy, bone fragility and has chronic lung problems.

He’s among 56 million Americans – nearly one in five – who live with disabilities.

Barbara and her husband Raul are Spanish-speaking, originally from different parts of Mexico. This spring, their daughter Rosita will become the first in either parent’s families to graduate from high school and go on to college. Raul supports the family financially by cleaning up construction sites, while Barbara’s time is devoted “24/7” to Alex.

Barbara relies on her Catholic faith. “Our greatest strength comes from God,” she says. “For me, as a mom, the fact that he’s still alive is the biggest gift God could give us,” she says.

What worries her is his frequent trips to the emergency room, and what the arrival of paramedics could mean.

The Villa home’s one of the 35 million U.S. homes that have health or safety hazards: its hallways are too narrow for the mechanical wheeled stretcher the paramedics use. So every time the EMTs show up, Barbara has to pick up her son from his bed and carry him down the ten-foot hallway to the stretcher, wheeling his IV pole along beside her.

She doesn’t mind doing it, but she’s afraid the exertion could cause an injury.

“It’s very frustrating,” Barbara says softly, sitting at Alex’s bedside. “I could hurt a vertebra, or he could hit his head.”

The family has looked into moving to a location more suitable for the ambulance visits she describes as “almost weekly,” but finances are tight, moving expensive. Buying another home is out of the question, and the family doesn’t want to bother the many neighbors who would live much closer to them in an apartment complex.

So, through a Washington County caseworker, Barbara and Raul reached out to Rebuilding Together Washington County.

On April 28, during National Rebuilding Day, volunteers will remove the window from Alex’s room and replace it with an Americans with Disabilities Act-compliant doorway and ramp.

Emergency medical technicians will be able to easily and quickly transfer Alex from his bed into the mechanical stretcher, transport him out of the home and into the ambulance. The changes will prevent injury, improve Barbara’s quality of life, and by shaving off previous seconds, could save Alex’s life.

The two volunteers who will work on the Villa home are highly-paid specialists accustomed to working in demanding environments: hygienic “clean rooms” at computer chip fabrication plants.

They’ll use a zip wall, HEPA vacuum and special fans to make sure their work doesn’t add airborne particulates that could trigger Alex’s allergies.

“We specifically hand-picked these people to do this job because of the highly sensitive nature of the health needs,” RTWC Program Manager Monica Arnett says.

Barbara, Raul and Rosita are excited for the peace of mind the repair work will bring them – and Alex.

“It’s all for Alex,” Barbara Villa adds. “Everything I can do, I do for him.”