At 18 months, Alex Nicely was diagnosed with cerebral palsy (CP), a birth defect that causes a person to have problems moving and, sometimes, speaking.
“The main treatment for a case of CP like mine is physical therapy,” he said about his particular condition. “I went to physical therapy for the first thirteen years of my life, and I hit milestones like walking and standing independently faster than other kids.”
Alex said around his 13th birthday he experienced more and more trouble getting around. Doctors told him he was through a growth spurt, which was typical for boys in his age group. While Alex’s bones grew like normal, the CP prevented his muscles from maturing.
“When asked about a prognosis the doctor let us know that there was not much that could be done. Typically when a child reaches that point in their journey with CP they are fitted for a wheelchair and continue through life much like a paraplegic. Luckily, my parents refused to accept that fate.”
Alex said his parents started researching innovative treatment options and found an experimental kind of therapy in Poland. This method of physical therapy involved wearing a suit that holds the body in perfect alignment while the patient performs certain workouts for six hours, six days a week for four weeks in a row.
The price tag of that kind of treatment was $50,000.
“My family was middle class. Both my mother and father worked very hard, but a price tag of that magnitude was just not reachable without assistance,” he said. “We reached out to the community in Knoxville and we put on several fund raisers to make it possible. In just 18 months, we raised the $50,000 needed for the treatment,” he said.
At the time, Alex said he really didn’t understand the magnitude of what was going on, but around the age of 18 it hit him that his story was unlike anyone else. He said the treatment changed his life and he wouldn’t be a mobile as he is today without it.
In his early 20s, Alex gained new respect for lifting weights. He said at first he did it for the trivial motivation of looking good for women but then he realized that he should be taking advantage of an ability not many people with CP can do.
LIFT WITH a PURPOSE
Alex established Lift With Purpose as a nonprofit organization that puts on powerlifting meets across Tennessee in April of 2014. The organization uses the money generated from entry fees and other donations to pay for physical therapy for people who couldn’t otherwise afford it.
“I also had a strong urge to use what I had been through as a teen to help others and so Lift With Purpose was born,” he said.
They held their first event in August of 2014 at the Gold’s Gym in Murfreesboro. Through private donations and the powerlifting meet, $2,200 was raised to send a three-year-old boy named Easton with cerebral palsy to a physical therapy clinic in Provo, Utah.
At a powerlifting meet, each athlete gets three attempts at each lift in the three categories: squat, bench and deadlift. The goal is to have the largest total (in pounds) possible, and your highest successful attempt of each lift is added together.
Alex said Easton has shown amazing progress and can now walk with a walker.
Since then, Alex has hosted two other events around the state, benefitting two other children including Sarah, a 13 year-old girl who was paralyzed from a car accident, and Demetri, a 13 year-old boy with cerebral palsy.
The next meet is August 22nd at 8 p.m. at Gold’s Gym in Murfreesboro and will benefit another nonprofit called Special Kids, a Christian organization that provides therapeutic rehabilitation and professional nursing services to children with special needs.
“Special Kids provides physical therapy for children regardless of their ability to pay,” he said. “If you doctor says you need three visits a week then regardless of what insurance says, you get three visits a week. It’s incredible.”
Alex said starting a nonprofit is not all rainbows and butterflies.
“I love what I’m doing here and these kids are why my heart beats, but it’s not easy,” he said. “I’ve a lot of my own money invested in this and I don’t care because it’s only money, but there are days when it’s just hard,” he said.
“We’re starting to put together a nationwide project and we’re reaching out to big companies for financial backing and it’s a competitive thing to do. We’re going to get turned down a whole lot more than we’re going to get told yes, and it’s hard but it’s totally worth it.”
Alex said regardless of how difficult it may be, he believes God has hand His hand in what he’s doing and he tries to let Him lead the way.
the RIDE to CHANGE LIVES
“We’re putting together something called The Ride to Change Lives,” he said. I’m going to hand cycle from Bristol to Memphis. It’s 501 miles, and we’re going to do it in 10 days,” he said.
He said he’s going to “Forrest-Gump it” and have a videographer friend document the trip across the state.
“The same day I agreed to work with Special Kids, I got a call from a woman who lived in San Diego. She was crying and asking me to help her daughters get back into physical therapy,” he said. Alex said because he is a small organization he knew he had to do something else.
By doing the Ride to Change Lives Alex hopes to gain national attention and raise money to help the Whaley sisters, a set of twins born with a mitochondrial disease in San Diego.
“We’re asking everyone to donate just $1 for the cause, and hopefully we can get some kids the physical therapy they need,” he said.
The Ride to Change Lives, expected to cost approximately $6,600, has a tentative start date of September 18th, depending funding and donations. Alex said they are still looking for sponsorships.
“We’ll find it whether I have to work two jobs or not,” he said.
Alex works with Comcast as a customer service representative and has picked up a second job at night at Thortons mopping and sweeping fuel the dream of Lift with Purpose and The Ride to Change Lives.
Alex first moved to Nashville in 2008 to pursue culinary school. He returned to Nashville in 2012 after spending two years back in Knoxville.
He decided to move on from his dream of culinary school because he realized it wasn’t something he could do long term with his condition.
“To be honest, I went back to Knoxville and took two jobs working 70 hours a week for nothing but myself. I wasn’t doing anything with the money I was just [saving] it. I woke up one day with $10,000, and I was sad. I was just sad. I felt selfish. I was like, ‘I could die tomorrow, and no one would care.’ I ended up blowing it all, and I look back on that now and realize that was a phase of my life but I went through it because now I know all that isn’t important.”
Alex said the idea of what’s behind a community is how you affect the person next to you.
“My impression on everyone is all that I have left,” he said. “No one cares about the speed boat, my credit score or how much money I have. All that has a place. I’m not saying we should all go live in tents, but you’ve got to remember what’s important, what community is and your impact on the person next to you.”
Before going to bed the night before an event Alex said he it’s always in the back of his mind that no one is going to show up. He said without fail though, there’s a group of guys he knows that come to ever event he has no matter where.
“We see each other in between the gym at events and stuff like that and we say what’s up and we talk but those guys taking their time and spending their hard earned money to come to my events is awesome and it really makes Lifts With Purpose what it is,” he said.
Alex said he wants Lift With Purpose to grow as an organization so that when people come to him needing help, he won’t have to tell them to wait for him to put on an event to raise the money, he could help that person instantly.
“It means a lot that these parents gave me an opportunity to help their children. I’m just a little country kid from nowhere just out here working hard,” he said.
To get involved with Lift With Purpose or The Ride to Change Lives visit the highlighted links or email Alex directly at firstname.lastname@example.org.
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