Running For A Cure: Teen Raises Funds To Research For Best Friend’s Disease

Running For A Cure: Teen Raises Funds To Research For Best Friend’s Disease

By Erica McCrystal

Running the 13.1 miles of a half marathon can be a grueling task. But 13-year-old Ryan Melendez of Flanders has taken the up challenge to raise money to find a cure for the disease that plagues his best friend.

Melendez, an eighth grader at Mt. Olive Middle School, is gearing up for his Bar Mitzva ceremony on Dec. 9. In the Jewish faith, a mitzva is a commandment and also a good deed. It is common for young adults preparing for their b’nai mitvot to choose a mitzva project.

Melendez’ project is extra special because it is in honor of his best friend Brendan Wronko, 14, of Budd Lake. While considering ideas for his project, Melendez was looking for something meaningful.

“I realized that I had this friend who has a disease that he’s had his whole life, and since I’ve known him since second grade, it’s gotten progressively worse,” Melendez says. His mom, Michelle, came across The Halloween Half Marathon in Morristown scheduled for Sunday, Oct. 21. For his mitzva project, Melendez decided to register for the race and fundraise money to go toward research to help find a cure for Wronko’s disease.

The two met they were in the second grade at Mountain View Elementary School in Flanders. Wronko has a rare condition called neuroaxonal dystrophy. His older sister, Sarah, passed away from the same disease in 2014.

“They both started with gait disorder,” says their mom, Kelly Wronko, “walking and falling, and losing their balance around 5.” Sarah was misdiagnosed initially and underwent major spinal cord surgery. When Brendan started to show the same symptoms at age 5, the neurologist realized it was a genetic disorder. When Brendan was 6 and Sarah was 8, “Johns Hopkins was finally able to diagnose them,” says Wronko. “It’s a very, very rare disease. Very few people have it in the world. And I have two.” Their brother, Collin, 11, is a carrier.

Wronko says, “Both children are atypical; this is usually an infantile disease.” Neuroaxonal dystrophy falls under the category of NBIA (Neurodegeneration with Brain Iron Accumulation). It is a disorder that causes cognitive regression, dementia, muscle spasms, and difficulty with movement.

“It’s an iron buildup in the cerebellum, mostly, and there’s just nothing they can do about it,” says Wronko. “It’s just one of those horrible diseases that you kind of have to watch it happen.”  There are medications to help with some symptoms, but there is no cure for the disease.

The Wronkos actively fundraise for the NBIA Disorders Association. Sarah Wronko had created beautiful paintings, and the Wronkos organized auctions to fundraise under the name Love Tremor. They auctioned off her original works on canvas and prints and also have a clothing line with her prints. Initially, she could hold a brush. Later, she used her hands.

“The tremoring is part of the disease,” says Wronko. “Her hands and legs tremor, so that’s why we call it Love Tremor. And she would sign the paintings with her thumbprint because she couldn’t sign her name.” Unfortunately, Sarah Wronko died from the disease at age 11.

For Brendan Wronko, he has been involved in racing for awareness and funding to find a cure. His aunt, Kelly Wronko’s sister, is a runner and started running races pushing him in a racing wheelchair. “Brendan has been pushed in several races in a racing wheelchair with a team that takes turns pushing him,” says Wronko.

While the Wronkos are very active in fundraising for research, they also find faith to be very important. Brendan Wronko was invited to go to Lourdes, France with the St. Luke’s Special Needs Ministry three years ago for Special Needs Week. At the private baths, he was immersed in the spring waters. Miraculously, the disease has not progressed since then.

“He is on the same exact medicine that he was three and a half years ago,” says Wronko. “He speaks the same. He can still crawl. He doesn’t have a feeding tube. He’s alive. These are really amazing things. It’s a gift to have him here.”

Wronko reflects that she has learned a lot from her kids about appreciating life.

“Our kids are really special,” she says. “They’re not going to be here as long as other people, but they sure have taught us so much about life and what’s really important. They taught me more than I thought that I would ever know about. It’s like a secret to life. We don’t really sweat the small stuff that people get worried about or get mad about. I think that is a blessing too.”

When Melendez met Brendan Wronko, he was using a walker. Melendez recalls thinking, “This kid looks pretty nice. I guess I’ll try and make friends with him.” That was the start of six years of friendship. Melendez’ initial impression of Wronko was spot on. “He’s really nice and kind to everyone,” he says. “He’s very upbeat and happy all the time.”

He has even helped him with his reading and schoolwork and pushing him in his wheelchair in school. When they hang out, Melendez says, “We really like to play cars since it’s very easy for him to do, and we like to watch TV together.”

Michelle Melendez says, “Ryan doesn’t notice disability. Ryan just looks at a person, and I think that’s what Brendan’s kind of taught him. He never looks at somebody that has a disability as having that. It’s more of they are just a person like everybody else, they just have limitations.” Kelly Wronko has admired the same quality in Melendez. “Ryan’s a special guy,” she says. “Not all kids do that. Not all kids get it. He’s a special kid.”

The boys have modified playing catch so they can both participate. They also went to Lego Land together.

“We went to specific stations he could do; there was a ball pit part where you could build with Legos,” says Melendez. “He got off his wheelchair, he got in, and we played in there. It was really nice because we could all do it together.”

Melendez is eager to help contribute to finding a cure for his friend’s disease. For his Bar Mitzva project, he set up a Pledge It web page to accept donations. People can donate per mile or a flat rate. He used social media to spread the word about his fundraiser.

“I posted it on Instagram, I put it on Snapchat, I put it on most platforms of social media so it could get out to all of my friends in hopes of them and their parents donating to the cause,” says Melendez. He also sent emails out to family and friends.

His goal is to raise $5,000 for the NBIA Disorders Association to fund research to find a cure. On race day, Melendez had raised $2,492, which is about $191.66 per mile. This was from 47 pledgers. He is leaving the site open until Nov. 30 to give more people opportunities to donate and to reach his fundraising goal.

“I think it’s great that he’s taken to a cause that’s close to his heart, and hopefully this will go towards finding a cure,” says Michelle Melendez.

The Halloween Half Marathon was Melendez’s first half marathon. But he is no novice to running. He has been on the Mt. Olive Middle School Cross Country Team since the sixth grade. “Running started out as a secondary sport to swimming, which is my main sport, and in seventh grade, I realized that I was actually pretty good at it, and I started to pick it up a little bit more, and I started running more, and now I’ve realized that I’m one of the best runners in the school and can actually do these things to help out friends,” says Melendez. As a seventh grader, he took fourth place in the Meet of Champions. This year, he took second place after helping pick up the eventual winner who had fallen down a hill.

“His coach actually recommended, because of his abilities, that he should try and do something a little more challenging,” says his mom. He decided a half marathon was a good challenge and great opportunity to fundraise for a cause that is important to him.

Cross country races in middle school are typically 1.35 miles. During practice, Melendez says, “we run from two to three miles every day.” He needed to boost his mileage in order to prepare for 13.1 miles.

He started training for the race in August.

“One of our friends runs a lot of marathons, and she’s been working with Ryan and giving him coaching ideas and how to train,” notes his mom. Melendez’ plan was to increase his mileage on his long runs by one mile each week, building up to 13 miles. Prior to the race, Melendez says, “I’m a little bit nervous, but that’s lessened over the weeks knowing that I’m getting close to 13 and that I’m not going to fail hopefully.”

Melendez’ goal time was under two hours, which he shattered, crossing the finish line at 1 hour and 43 minutes, a 7:53/mile pace. “It was a lot more challenging than I expected because of all the hills on the course that I hadn’t trained that much for, and it felt a lot longer than what I was ready for,” says Melendez. But those hills didn’t seem to slow him down too much as he took first in his age group and 65th out of 633 overall finishers.

Days before the race, Melendez says, “Brendan seems really excited. I mean, we’ve been friends for six years now, and he’s always excited to see that I’ve done something new, and he’s always happy.” Sure enough, Wronko was thrilled to see his best friend accomplish his goal. As he crossed the finish line, Wronko was there holding up a big poster to cheer him on.

“I didn’t know that he was coming,” says Melendez, “so when I saw him after I finished I was filled with so much joy and happiness.” This duo certainly knows how to support one another. And after the race, they enjoyed a meal together.

Not only has Melendez achieved a great personal accomplishment in completing his first half marathon, he has done so in honor of his best friend. His project continues to raise awareness and funds to help combat Wronko’s disease- an effort that shows commitment, understanding, and sacrifices of true friendship.

To donate through Ryan’s fundraising page, visit https://pledgeit.org/run4b.

For more information about NBIA, visit https://www.nbiadisorders.org/.

To view Sarah Wronko’s paintings, visit Love Tremor on Facebook. Inquiries about purchases can be made by sending a message.

 

 

 

 

Leave a Reply

Your email address will not be published.