LaMondré Pough, 46, has always been a go-getter, despite a diagnosis of spinal muscular atrophy (SMA) as a baby and a life expectancy of just five years. Perhaps the drive to defy those expectations drove him to live a selfless life with purpose, because not only has LaMondré beaten the odds, he has crushed them.
“I started my own business helping people live authentically when I was 21,” said LaMondré. “Today, I’m working as a consultant and a speaker promoting disability inclusion.”
LaMondré knows firsthand how disability inclusion can change the trajectory of a life. Having SMA, a disease that causes muscle weakness which impacts one’s ability to move, walk, eat, or breathe, has taken him down a path that has not only changed his life, but has touched the lives of countless people living with disabilities.
Realizing his potential
Symptoms of SMA usually appear shortly after birth, however LaMondré’s family didn’t notice any problems until he began walking at the remarkably young age of nine months. Whenever he fell down, he took an unusually long time to get back up.
His mother, Betty, brought this to the attention of his pediatrician, and then a specialist, who found nothing wrong. But her mother’s intuition didn’t accept that as an answer. She remained persistent, and eventually, through a muscle biopsy at the age of 18 months, LaMondré was diagnosed with juvenile Type II SMA. The condition affects all of his voluntary muscles from the neck down, leaving him unable to walk, feed, or care for himself.
At the time, doctors did not give LaMondré a favorable prognosis. “They didn’t expect me to live more than five years, and if I did, they said I’d be aware but unresponsive. But my mom never treated me any differently, like my potential wouldn’t be realized,” LaMondré said with admiration. “She taught me self-respect and dignity, and that if you want something in life, then go get it. She and my big sister were my role models for working hard and making things happen.”
It would seem his doctors had underestimated LaMondré’s potential. He attended a school for children with disabilities, and when his disease progression caused him to slow down physically, that just gave him time to focus on his personal interests like music and singing. “Honestly, I think that gave me an advantage over my peers in some ways, because I became still and focused,” LaMondré reflected.
As an inquisitive 11-year old, LaMondré noticed his sister, Lolita, was much more academically challenged in her school compared to his experience. Being a bright child, he wanted the opportunity to participate in classes that would satisfy his intellectual curiosity as well.
“I lied,” he laughed. “I lied to my mom and I lied to my teacher. I told them both that the other one wanted to talk about mainstreaming me into a regular school. Then I set-up the meeting. At 13, I became one of the first kids with disabilities to attend a regular school in South Carolina.”
LaMondré, a lifelong resident of South Carolina, continued to make things happen for himself. It wasn’t easy being “the kid in the wheelchair,” he said, but he turned that perception around too. “One day on the playground, I sang Girlfriend by Bobby Brown, and all the girls loved it. Starting then, I became popular. I wasn’t thought of as the kid in the wheelchair anymore, I was the guy who could sing. That gave me confidence and comfort.”
LaMondré sang throughout high school, performing with the all-state choir. And when his advisors pushed him toward vocational rehabilitation after high school, he wasn’t interested. Instead, he enrolled in college where he studied arts and English literature and was elected student body president.
While in college, LaMondré worked for South Carolina’s first Independent Living Center where he ran special projects and advocacy programs that helped others with disabilities live “as independently as they choose.” That laid the foundation for what he’s doing today.
“Living big” today
LaMondré has been living independently in his own home since the age of 23. Today—more than two decades later—he remains active and independent, thanks in large part to 48 hours per week of personal care services provided by BAYADA.
“I've worked with a number of agencies, but BAYADA has been the best by far,” he said. “BAYADA helps to bring balance and stability in my life. ’Will I have someone to get me out of bed?’ or, ‘Will someone be here to feed me dinner?’ are questions I just don't worry about anymore because they always come through. That's the security BAYADA provides.”
Thanks to that security, LaMondré can fully embrace his role as a disability inclusion consultant. He travels across the country as a public speaker and serves as the chief business development officer for Ruh Global Impact, a company that helps businesses, schools, and organizations develop and implement strategies that promote disability inclusion. He also advocates for disability rights, meeting with legislators and attending events to raise awareness and increase funding for programs that support those with disabilities, such as home health care services.
“Disability is a minority group that anyone can join at any time,” said LaMondré, who learned at an early age that many people in his situation didn’t have a voice, or their voices were not being heard. “I realized that I can give a voice to people with disabilities, and I can also magnify the voices that are already out there.”
LaMondré empowers and inspires people to live big, live full, and live authentic, because whether they have a disability or not, they have value.
“SMA doesn’t stop me from doing anything that I really want to do,” he says. “For example, I have no desire to mountain-climb, but I have every desire to overcome whatever mountain stands in front of me.”
Be inspired! Watch what makes LaMondré a role model for people of all abilities.
To learn more about how BAYADA’s specially trained clinicians can help children and adults with SMA achieve the highest quality of life at home, call 800-305-3000 or visit bayada.com.