Getting a free Xbox would make any kid’s day, but for Marccelo Alvarez, it was, in his mother’s words, life-changing.
The Springfield area native was born with a cartilage and bone development disorder called X-linked chondrodysplasia punctata 1.
A rare condition that occurs almost exclusively in men, X-linked chondrodysplasia punctata 1 presents as abnormal spots on the ends of bones and cartilage, and it can result in distinctive features such as unusually short fingertips or toes, or a flattened nose, according to the U.S. National Library of Medicine.
While it does not typically affect a person’s intelligence or life expectancy, the condition can lead to serious complications like restricted breathing from thickening of the cartilage that makes up a person’s airways, or compression of the spinal cord, which can cause pain, numbness, and weakness.
Marccelo and his family did not learn that he had the disorder until 2012. He underwent a pair of surgeries, most recently in 2017, and though he needed a walker and experiences spasms that require constant attention, he could function well enough to return to school last September.
Unfortunately, the worst was yet to come.
While in school, Marccelo suffered a spinal cord injury that left him unable to move from the neck down, and since then, his life has been a whirlwind of doctor appointments and hospital visits as he undergoes a lengthy, arduous, and expensive rehabilitation process.
Relief for Marccelo and his mother, Guissela Castillo, came in the form of Micki Purcell, founder and president of Walking with Anthony, a nonprofit dedicated to assisting people with spinal cord injuries.
The mother of a man with a spinal cord injury, Purcell met Castillo through a referral from a specialist at MedStar National Rehabilitation Network, where Marccelo was receiving recovery services.
That meeting convinced Purcell that she had to do everything she can to help Castillo and her son.
In addition to getting Marccelo an Xbox that he can operate from his wheelchair without using his hands, Purcell chose the 14-year-old as the honoree at Walking with Anthony’s seventh annual Charity Celebrity Golf Tournament and Dinner, a yearly fundraising event that the nonprofit organizes with support from the Washington Redskins Charitable Foundation.
“It was just heartwarming to meet Marccelo,” Purcell said. “He’s such a special person, and I immediately knew that he was a person we needed to help, and Guissela being a single mother…it’s very, very hard on her, so we’re very excited to help them.”
Since it was founded in 2010, Walking with Anthony has raised more than $4 million to help people with spinal cord injuries with rehabilitation therapy, caregiving, equipment, and other expenses, which run up to an average of $250,000 in the first year alone, according to the nonprofit.
Purcell started Walking with Anthony after her son, Anthony, broke his neck in a diving accident. Anthony Purcell now serves as the organization’s executive director.
Expected to bring in about 270 participants, the seventh annual Walking with Anthony golf tournament and dinner will take place at the Country Club of Fairfax on Sept. 30, and a number of people affiliated with Washington’s National Football League team are scheduled to attend, including President Bruce Allen and both current and former players.
While tickets for the golf tournament have sold out, Purcell says there are still some open seats for the dinner, and Walking with Anthony accepts donations through its website.
For Castillo, the charity event’s main appeal is not the star athletes or even the financial generosity of its donors, some of which will go to help Marccelo, but rather, she looks forward to getting an opportunity to raise awareness of the challenges that people with spinal cord injuries face.
“It’s a very difficult injury or condition, and it’s super expensive,” Castillo said. “We need to spread this word out there because I wish Mickey could help everyone, you know?”
As a single mother, Castillo is largely alone in the responsibility of taking care of Marccelo, a demand that has taken its toll physically and emotionally as well as financially.
In order to stay with her son during his hospitalization and rehabilitation, Castillo left her job, and she has started to experience back issues, partly from carrying Marccelo since she has been unable to afford a stair lift that would make their two-story house accessible.
Marccelo also needs a power wheelchair with a head array that would let him control the device without his hands and a wheelchair-accessible van, since the vehicle that Castillo currently uses to transport her son to various appointments is becoming broken down.
Despite all the difficulties and stress, Castillo remains unwavering in her devotion to her son, who she describes as “full of love” and the kind of child who tries to help everyone he can.
“He always says we never give up. I said never, we’ll never give up,” Castillo said. “I will do anything in my power to be able to provide the things that you need, and not only that, but emotionally, to give you support. A spinal cord injury's not going to tear us down. We're going to fight until the end.”