David Alvarez’s symptoms started when he was in kindergarten.
He walked on the tips of his toes. He was slower than the other kids in gym class. He required regular breaks, even after walking a short distance. Increasingly, he struggled ascending stairs. And, as he got older, he began to lose his balance and fall.
“It wasn’t like I was in pain,” Alvarez, 18, says. “It was just, I felt very weak.”
“He kept telling me, ‘I’m getting weaker,’” says his mother, Madeline, seated next to her son at a Bridgeport coffeehouse, just a few miles from the University of Bridgeport, where Alvarez is now a freshman.
For 12 years, Alvarez’s decline was a part of life for his mother, father and little sister. It controlled where they went as a family and what they did. And as symptoms persisted with no answers, it weighed on Madeline’s mind.
“You don’t want to see your child having to face any difficult challenges,” Madeline says. “I would think, why couldn’t it be me and not him?”
For much of Alvarez’s childhood, he was poked and prodded by doctors. One believed the tendons in his legs were too tight. Another posited muscular dystrophy was the cause. One, flummoxed by a series of negative test results and Alvarez’s continued deterioration, estimated that he’d be wheelchair bound by 13.
The physical effects of the disease were draining. For his family, it was psychologically taxing, too. But Alvarez — always quick to flash a grin, even when speaking of his own health — denies any trauma.
“I was happy, I didn’t really let it get to me,” Alvarez says. “I never was like, ‘This is my life.’ I still did what I wanted to do.”
He still does.
David Alvarez’s shirts are unisex designs and come in every size from small to extra large. They retail for $24.99
When the conversation shifts from his illness to his nascent brand, “Made Clothings,” he leans forward, rubs his palms together and widens his darks eyes.
“The whole point of this is to represent those who have made it, or are in the process of making it, through any hardship in life,” Alvarez declares.
Alvarez always loved fashion. But it didn’t occur to him that he could start his own brand until his senior year at Seymour High School. A classmate had found a hustle: buy blank T-shirts, sew a logo on, and sell it to friends at a profit. Respecting his peer’s DIY spirit, Alvarez decided to adopt the concept and strengthen it by incorporating his own story.
He crafted a simple, eye-catching design — a red, black and white color scheme with the word “Made” over the left breast (the Japanese symbol for “made” stands in for “a”). Alvarez began peddling to family and friends.
All the while, Alvarez was receiving regular spinal taps to treat what was deemed a rare genetic disorder.Read Full Article
Spinal Muscular Atrophy (SMA) is caused by a deficiency of a motor neuron protein called SMN, which promotes normal motor neuron function. Without the protein, nerve cells located in the spine, that control much of our movement, can’t send signals to muscles, which wither from lack of use.
It was a grave diagnosis, but not one without hope.
“We cried,” Madeline remembers. “But then the doctor introduced us to the medication. I went from crying to so happy because there was a treatment.”
Two months later, on July 17, 2017, Alvarez received his first in what will be a lifetime of injections of the drug Spinraza (approved by the FDA in December 2016), which is shot into his spine four times a year.
His mother applies an anesthetic cream to his back before each injection, but it’s an unpleasant, 10-minute long process nonetheless.
“I don’t feel the actual puncture, but I feel it moving around in my back,” Alvarez says. “It definitely is something invasive.”
Still, as Alvarez is wont to do, he doesn’t dwell on the discomfort of the treatment. He marvels at its effectiveness.
With each successive treatment, Alvarez feels himself growing stronger. He is sturdier on his feet, getting in and out of chairs has become increasingly easy, and he’s now able to lift weights.
With his newfound strength, he’s also hoping to expand his business and offer a greater variety of clothing options for men and women. And he’s working to set up speaking engagements at local high schools where he can share his story.
To hear him tell it, his struggle with SMA was a gift.
“I feel like it’s made me stronger if anything,” Alvarez says. “Nothing really gets to me.”
Justin Papp is a staff writer.
Email: email@example.com; Twitter: @justinjpapp1