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Siblings’ Creativity Shines Through 22 Story by MELISSA SUMMERS Photos by KAREN FUCITO Often, it’s not about what you can’t do, but what you can do that gets noticed. It couldn’t be truer for two of Hopatcong’s brightest talents in the worlds of comic book writing and fine art. This brother and sister duo have not let their physical challenges prevent them from bringing their creativity to the world. Daniel Anastasia, a published comic book writer, and Amanda Anastasia, an accomplished artist, refuse to let their disabilities define them as they wow their fans. Amanda, 30, and Daniel, 25, were born with a condition called Aicardi-Goutieres syndrome, which affects all of their motor function, according to their mother, Samantha Anastasia. Both are non-verbal but have lots to say. Their most controlled movement is with their heads. “So, that’s how Amanda paints. That’s how Daniel controls the computer. It’s how they drive their wheelchairs,” Samantha said. The siblings had Aicardi-Goutieres syndrome from birth, although they were not correctly diagnosed until they were older. People with AGS progress normally until they go through a motor skills regression within the first two years of life. The body’s immune system turns on itself, causing damage to the brain and nervous system, according to Samantha. For the Anastasia siblings, this happened around their first birthdays. “Amanda was 19 years old and Daniel was 13 when we finally got a diagnosis because it was a very rare condition,” their mother explained. “They are doing a lot more research, so now it’s just considered ‘rare.’” Amanda and Daniel are two of the oldest people with AGS Type 2 of 7 different types of AGS, and as such, are natural role models to children within the AGS community. The Anastasias see Dr. Adeline Vanderver, LAKE HOPATCONG NEWS <strong>Fall</strong> <strong>2023</strong> considered an expert in AGS, at Children’s Hospital of Philadelphia once or twice a year. By the time Amanda and Daniel were diagnosed, there was no medication available that would improve their condition, but Vanderver is now treating children in an attempt to stop the regression. “For those individuals who have already regressed, that treatment’s not going to do anything,” Samantha said. “But it’s good for Amanda and Daniel to stay on her radar as she treats the younger kids.” The siblings use a laser pointer attached to the side of their glasses and a posterboard with letters, numbers and other phrases to communicate. Computer keyboards are used similarly, with a device that tracks their movements. Amanda started in a special needs school and entered the Hopatcong school district when she was 8 years old, according to her mother. She was given a personal teacher and aide; however, learning to spell and read was very challenging, Samantha recalled. Amanda used a camera mouse system developed at Boston College that tracked her head movement to move the mouse. “Then when she dwelled on a selection for a set amount of time it clicked like a mouse,” Samantha explained. The system included multiple monitors, towers and wires and was set up on a six-foot table. “It was wonderful at the time because it was brand new technology, but it took up a lot of space.” Six years later, teachers welcomed Daniel with a streamlined version of the same technology built into a laptop. Daniel started imagining characters while playing with action figures, and it became obvious he had stories in his head, his mother recalled. Daniel said he was inspired by DC Comics, specifically his love of Batman and monster hunters. “When I write it’s like a release of emotions. I always listen to music. Music inspires my writing, and it needs to be loud. I choose the music based on what I am writing,” said Daniel. A fight scene might require music by Sick Puppies. For the development of a female character, Hailstorm or Taylor Swift would be more appropriate. Initially, the narratives were rough and only made sense to the budding author. He focused on action/ adventure themes and anime-type characters. Two years ago, he began working with an illustrator to put faces to his creations. Paul Walcott, a freelance illustrator originally from West Orange who is now based in New Castle, Delaware, first heard about Daniel from a mutual friend who told him about an inspiring comic book writer who needed an artist. “After reading his stories, I saw he was passionate about his craft,” Walcott said. “With the characters and the world-building, I was very excited to help him bring his story to life.” Walcott said the writing process was tricky at first, but a shared love of anime and manga made everything click. “He knows what he wants and has his story fully fleshed out, which makes my job easy,” said Walcott. Samantha said Daniel’s characters are from other realms. “They talk about what he feels the characters look like,” she said. “He’ll send Paul a description—the shape of their eyes, the color of their hair.” Book one of their first collaboration, “Henry Hunter,” was self-published in July. The title character came through a portal from the demon realm, and the story revolves around supernatural threats and romance, Daniel said. The second book should be finished in early 2024. Daniel also works with a writing coach who goes over whatever concepts he’s working on and helps him put them into words. Together, they are working on another comic called “Trax,” a series about a hero who battles corruption and injustices, Daniel said. “I always had Trax in my head since I was 11.” In a completely different series, tentatively titled “Anastasia,” Daniel explores what would happen if
his characters jumped off the pages and into their creator’s world. “Anastasia, the author, interacts with his characters,” said Samantha. “They come into his office and they complain about something he wrote about them. It’s funny, I just love it.” Notably, all the females in Daniel’s comics have one body part uncovered—their feet—a feature Daniel is quite fond of. “Women are barefoot in my stories because I think women’s feet are beautiful,” he said. Samantha described one interaction where the heroine stepped out of a poignant scene and asked the author Anastasia if he could draw her differently. “She said, ‘Can’t you give me shoes? I’m fighting!’” Walcott and Daniel have much more in the works, but their relationship isn’t only about bringing Henry Hunter to the masses. “Working with Dan has been a fantastic experience,” said Walcott. “Getting to know him, we have grown a stronger bond. It is more than comics. I consider him a great friend.” Amanda Anastasia first tried painting in middle school, when her art teacher decided to glue a long paintbrush to a visor since Amanda did everything else with her head. She wasn’t a fan then but decided she wanted to give it another try when her grandmother passed away in 2015. “She started painting flower pots for Christmas gifts,” Samantha recalled. “Then she said she wanted canvasses for herself for Christmas.” With new acrylic paints, she started by looking up pictures online and painting her versions. Two years later, Amanda began taking one-on-one classes at Arts Unbound. “Her instructor tapped into Left to right: Dan Anastasia looks at one of his daughter’s paintings. Allison Rohlff shares a laugh with Amanda Anastasia while on an outing at Hopatcong State Park. Daniel Anastasia writing at his computer. a whole different side of her painting,” Samantha said. When Arts Unbound closed in 2019, the instructor started her own company called The Pickled Artist, where Amanda painted until November 2022. Most recently, she has been working with Nanci Iovino at Art for All in Montclair. She continues to mix colors and paint entirely with her head, creating detailed and unique pieces. Iovino has taught her to paint on a larger scale, on a bigger canvas. “Nanci is teaching me to not be afraid to put more of myself into my paintings,” Amanda said. Amanda posts her work online and has sold or commissioned 30 to 40 paintings. For the past six years, she has produced a calendar, selling about 150 to 200 each year. She’s already chosen several pieces for the 2024 edition. Her favorite subject matter are animals of any kind. She’s even had some of her own work tattooed on her body so she can show off her art. They include her signature “Pink Zebra,” “Moon River” and, in honor of her grandmother, a breast cancer ribbon with butterfly wings. Amanda said she loves anything pink, and she’s obsessed with bling, shopping and going out to eat. She’s also a diehard “Grey’s Anatomy” fan. Allison Rohlff, one of Amanda’s long-time Direct Support Professionals, has known her for more than 15 years. “It feels like hanging out with a friend and not like work,” Rohlff said. More than anything, Amanda wants to be treated like a normal 30-year-old. “So many people talk to her like she’s a child, or they act like she can’t understand or hear them,” added Rohlff. “I know people don’t understand it, but it really hurts her feelings.” Left to right: A sample of Amanda Anastasia’s paintings. Amanda using a brush attached to a headband to paint. The cover of Daniel Anastasia’s first published comic, Henry Hunter. Amanda and Daniel with their mom, Samantha Anastasia, center. Amanda with Direct Support Professional Cara Peslak. Daniel at his computer communicating with comic book artist Paul Walcott (on screen) with the help of Direct Support Professional Gregory Hall. During the week Amanda attends events at Piece by Piece, a social and support group in Sparta, which aims to enrich the lives of those with intellectual and developmental disabilities. Once a week, Amanda joins a friend in various activities in the area for what they call “accessible Fridays.” “They both have chairs, and they do things together,” Samantha explained. “Organizations do things and wheelchairs don’t always fit in. It’s okay because you can’t make everything accessible.” Amanda will be moving into her own apartment at Rebecca’s Homestead by November. The Wantage property is an inclusive community for adults with disabilities. The residence opened in 2017 and is home to five residents. The apartment will be completely accessible and Amanda will have a separate entrance. She’ll live alone but will have 24/7 care, including her full-time aides, Cara Peslak and Rohlff, who will continue to work with her, and two overnight aides. Amanda is excited to move into her own home, but Daniel is a little worried for his big ...continued on page 24 lakehopatcongnews.com 23
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