AUSTIN, Texas — A Lesch-Nyhan Syndrome (LNS) diagnosis hs not dimmed Isaac Jacobs' passion for soccer. Jacobs is enjoying his senior year at Akins High School. The 18-year-old wants to go to college and study nursing. Teachers welcome his smile in class.
“We talk a lot about his plans and his future. Definitely good kid. Everyone knows him in the school and everyone talks to him,” said Akins High Teacher Daniel “Skip” Sanchez.
Sanchez is also aware of Isaac’s passion.
“He’s got all kinds of interests, but mainly focused on soccer, which has been evident since day one,” Sanchez said. “He’s always talking about Manchester United, and now that Austin has its own soccer team, he’s all about that.”
Jacobs’ love for the sport started around 3 years old, but it’s become something he shares with anyone who listens.
“His excitement hasn’t leveled out,” said Daniel Ortega, Jacobs neighbor. “It just keeps getting bigger and bigger.”
Ortega and his son are fixtures at the Jacobs family home most weekends. It’s become routine for both families. Jacobs’ mother, Bene Williams, welcomes the soccer fraternity.
“Besides me and my son, we’re the only ones who talk about soccer,” Ortega said. “So when we met him, we had someone else, who knows more than us. I couldn’t imagine not doing this all the time.”
“Daniel comes over. His son JP comes over,” Williams said. “Isaac is able to talk to them and relate to them entirely outside of his condition or what his deficits are. So if that means waking up early to make breakfast tacos, I’ll do that.”
This escape is a break from the family’s day-to-day living with LNS. The disease, which is genetic in nature, can cause gout-like swelling in patients' joints, and can also lead to slow development of motor function, as well as self-mutilation. It impacts one in roughly 380,000 people. Williams expected setbacks since Jacobs was born premature, but sought help when he wasn’t progressing.
“After he was two…three… his pediatrician referred us over to a neurologist. At that point, a lot of the Lesch-Nyhan patients are commonly misdiagnosed with cerebral palsy,” Williams said. “As I began to do more research on that condition, it didn’t fit Isaac's behaviors. It didn’t describe my son. He did testing and that’s when they came back with the Lesch-Nyhan diagnosis and Isaac was almost five at that point.”
Williams has become an advocate to help spread awareness about the disease, because she had to urge doctors to further examine Jacobs’ ailments.
“Sometimes you have to push. If what they’re saying doesn’t fit the bill, you’re not going to get that square peg to go in a round hole,” Williams said. “I needed to know what I was battling no matter how big or small. One of the key differences with Lesch-Nyhan is the self-injurious behaviors. That is what really pushes parents beyond the cerebral palsy diagnosis.”
Williams enjoys seeing her son relate to people outside of his struggles. Austin FC and the team’s supporters have embraced him. They have continued to receive Jacobs, and help make his dreams come true.
“They’re not just seeing the wheelchair. They’re not just seeing the disease. None of that matters in that moment. They’re all just fans in the stands, cheering on Austin FC, hoping we pull off a ‘W’ at the end,” Williams said.
“My favorite part was to meet the players,” Jacobs said. “Every time I get to go to a soccer game, I love it so much.”
Isaac will be back at Q2 Stadium when Austin FC returns in late February 2022.