“It’s things that we never really thought were possible,” Rockville Centre resident Debbie Cuevas, whose son Dylan was named salutatorian of his eighth-grade class at the Henry Viscardi School, said of his progress. “We’re so excited, and [for] my husband and I, it was kind of a pinch-me moment when we were at the graduation and he made his speech.”
At nine months old, Dylan, now 13, was diagnosed with spinal muscular atrophy, a rare degenerative disease that involves the loss of nerve cells in the spinal cord that control voluntary muscle movement. SMA affects about one in 10,000 babies, according to the National Organization for Rare Disorders, and does not have a cure.
“It took about four months of doctors’ visits, tests, blood tests, MRIs, skin biopsies,” Debbie recalled of the time she and her husband, Ron, spent trying to find out what was wrong with Dylan. “We were just put through the wringer.”
Finally, a neurologist concluded that he had SMA, and said that he probably wouldn’t live to see his second birthday. But Debbie and Ron sought help from doctors at Columbia University Medical Center, striving to provide the best life they could for Dylan, and “here we are,” Debbie said.
Since pre-kindergarten, Dylan has attended the Viscardi School in Albertson, where roughly 160 children with severe physical disabilities have a traditional educational setting through 12th grade. The school, which offers students a variety of therapies, assistive technologies and medical supports, also has a program called Reaching All My Potential for students who have completed high school and continue to work toward diploma goals and develop transitional skills.
“It’s a really good school for children with disabilities, and you don’t really have to worry about people making fun of you,” Dylan said, adding that he is looking forward to beginning high school.
“He’s not excited for the book reports,” his 9-year-old sister, Heather, quickly added with a smile.
In addition to excelling academically, Dylan is on the school’s wheelchair basketball team and is involved in the Student Council, which holds various fundraisers and food drives to help the community.
“I am always impressed with his determination, positive attitude and continued success,” State Sen. Todd Kaminsky wrote in an email to the Herald after giving a proclamation to Dylan. “Next time you think a challenge you are confronting is too difficult to overcome, think of Dylan.”
Debbie said she is thankful that the Rockville Centre School District gave him the opportunity to attend the Viscardi School. But, she recounted, after constantly being by her son’s side throughout his early childhood, it was overwhelming at first to let him leave the house every day.
“The school has been very good at letting me let go and help him to be more independent,” said Debbie, the school’s former Special Education PTA president. “That’s good for me, it’s good for him, and it’s good for the family that he gets some time to just be Dylan and not have Mom and Dad on top of him all the time.”
Arthur, one of Dylan’s nurses who has been with the Cuevas family for 12 years, is with him throughout his eight-hour school day, and cares for him for about 10 to 14 hours daily. Dylan has come a long way, Arthur said, since undergoing a tracheostomy, in which a permanent ventilator is implanted in the throat to help a patient breathe. The device sometimes makes his words hard to understand, though Heather is good at translating for him.
Despite being in consistent repiratory distress before, Arthur added, Dylan has been hospitalized only once since the surgery.
Dylan got the “trach” at age 2, after a year when the family was constantly at the hospital. Ron remembered sleeping in a chair next to Dylan in the pediatric intensive care unit at Cohen’s Children’s Hospital before he and Debbie approved the procedure. “He was getting to the point where he was exhausted breathing on his own…,” Ron said. “That was the moment, to me, where I knew I had a real special-needs child.”
Despite the obstacles, Dylan continues to live a full life. The joystick on his right armrest helps him control his wheelchair, and he can navigate a computer the same way. He also uses Eyegaze technology to operate a computer with his eyes. By focusing on control keys displayed on a screen, he can generate speech either by typing a message or selecting phrases already in the system. Debbie said the technology is evolving to help those like Dylan accomplish other tasks, and added that she hopes he can use Eyegaze to do homework when school starts.
Active in the community, he has served as a judge at Rockville Centre’s St. Patrick’s Day parade for the past two years. And as a Yankees fan, Dylan enjoys watching Aaron Judge and Clint Frazier play — he met them during spring training in Florida earlier this year — but his all-time favorite player is Derek Jeter.
As a 6-year-old, he met an even more recognizable figure through the Make-A-Wish Foundation. Initially, Dylan was unsure what to choose for his experience, but an idea came to him after he took an interest in the 2008 presidential election. His wish became clear during a White House tour in the waning months of George W. Bush’s presidency.
“When we walked out, he said, ‘Mom, I know what my Make-A-Wish is,’” Debbie recalled. “‘I want to meet Barack Obama, and I want to tell him about SMA. Maybe he’ll do something to help kids like me.’”
His wish came true in 2010, when the president greeted him in a West Wing hall outside the Oval Office. He also visited the Capitol and Pentagon as part of his tour of Washington, D.C., and met U.S. Sen. Chuck Schumer and U.S. Rep. Carolyn McCarthy.
Though Dylan’s disease is degenerative, Nusinersen (marketed as Spinraza) became the first drug approved by the U.S. Food and Drug Administration to treat SMA last year. After navigating the process of getting insurance approval, Debbie hopes he will be able to take it in a few months and that it will make him stronger.
Debbie is president of the Greater New York Chapter of the Families of Spinal Muscular Atrophy, and she continues raising awareness of SMA, and money for research. Since the once-dormant chapter restarted in 2006, the organization has helped support roughly 1,000 people affected by the disease in the five boroughs, Nassau and Suffolk counties, as well as some upstate communities.
Speaking to the Viscardi School’s board of directors, his classmates and their families at his graduation, Dylan thanked those who have made a difference in his life, and quoted Jeter and Obama.
“I was kind of floored by the way he articulated what he thought he needed to overcome in order to get to salutatorian,” Ron said. “He’s got other mentors that I know he considers highly, but I know that in his heart, those are the two people that reflect deeply on him.”