Courtesy of Cara Sillman
Freshman Drew Sillman with his mother Cara Sillman
More than a thousand students travel through the halls each day, but there’s only one who does it without knowing where his next step will take him. In a sea of the seeing, freshman Drew Sillman perseveres through a fight that few even notice.
Eight years ago, Drew’s world began to dim. His vision was getting progressively worse, and his parents, Mike and Cara Sillman, took him to numerous hospitals in an attempt to receive a diagnosis. Nobody knew what was happening. After countless appointments and tests, an answer finally presented itself.
“Drew was born a healthy, typical kid, hitting all his milestones,” Cara said. “Shortly after he turned six, at the end of kindergarten, we learned that he had rapidly become legally blind. In our pursuit to find out what was going on with his eyes, we received the devastating diagnosis of juvenile Batten disease.”
Juvenile Batten disease is a rare and fatal condition caused by mutations in the CLN3 gene, which prevents cells from clearing away waste properly. Over time, this builds up waste that damages cells, especially in the brain and eyes. Because of this, Drew experiences blindness, difficulties with movement and balance, seizures and a slow decline in learning and memory abilities. Over time, the disease takes away speech, mobility and independence, and, as of now, there is no cure.
Drew’s family and friends immediately took action. Several fundraisers were held in Omaha to progress the research towards finding a cure or even a treatment for juvenile Batten disease. Thanks to the efforts of Drew’s fundraisers and others around the world, clinical trials were held, producing a treatment for the disease.
“Shortly after diagnosis, our neighbors and friends showed us so much love and support,” Cara said. “They organized the first Battin’ 4 Batten event. Those proceeds went directly to Drew, and we were able to travel the country to get Drew in front of specialists at a few Batten Disease Centers of Excellence. Through these connections, we eventually were able to obtain an experimental yet very impactful medication for Drew to help slow the progression of the disease.”
Despite everything he’s gone through, Drew is still a kid. He loves pepperoni pizza, playing Mortal Kombat and cracking jokes that catch his teachers off guard. If you ask him his favorite class, he’ll say lunch. His favorite activity? Wrestling with Dad. For those who know him best, his creativity and charm are just as memorable as his sense of humor.
“Drew has an easy-going and fun-loving personality that makes him a joy to be around,” Cara said. “He’s naturally social and likes to be around others. He likes to laugh and likes to make others laugh. He’s pretty good at remembering and delivering dad jokes, too.”
His lighthearted spirit follows him into the classroom, where he’s supported by a team of his teachers who work closely to ensure Drew can fully participate in his education.
“Drew is a jokester,” special education teacher Reagan Hansen said. “Every time I say, ‘Where’s my laptop? Where is it?,’ he tells me it’s in his pocket. It makes me laugh every time. That’s a daily occurrence since I lose my laptop a lot for attendance. He is always keeping it interesting around here.”
At school, Drew has many tools at his disposal to ensure his success in his classes. For example, he uses a calculator that speaks aloud to him when he presses buttons and a typewriter that types in Braille, allowing him to read what he wrote.
Drew’s teachers are also supportive in making sure he can participate in class discussions and activities. In history class, while other students read an online textbook and take notes, his teacher, Chase Hutchison, prepares a video on the topic that Drew can listen to. Although history class is great, Drew loves to act, so drama class is where he really comes alive.
“We make sure to work with the drama teacher [Nicole Schlautman],” Hansen said. “She’s amazing, and she gives him shorter, more concise lines that he can memorize, say and be understood. He loves acting and recording his own movies with his cousin, so it’s the perfect class for him.”
Thanks to his creativity, sense of humor and strong support system, Drew continues to thrive at home and at school. Although his day-to-day activities may look a little different from those of his peers, his determination to live a joyful life proves that he doesn’t need to see the world to light it up with positivity.
“CLN3 [juvenile Batten disease] is so rare that most people, even many doctors, have never heard of it, which means families often face this devastating diagnosis feeling isolated and without answers,” Cara said. “Awareness changes that. Every conversation, every event and every shared story brings us one step closer to better treatments and, ultimately, a cure.”
The Sillmans accept and appreciate donations at any time at their Venmo @Batten4Drew or PayPal @Batten4Drew. Proceeds go to funding future clinical trials and research for treatments for juvenile Batten disease.