Just five years after Jaxton Engstrom was born, everything changed for him and his family. After he began losing his vision around age five, Jaxton was misdiagnosed with retinitis pigmentosa.
Jaxton, the now 18-year-old from Waterloo, Iowa, learned braille and began walking with a cane for the next year, until he suddenly collapsed and had a seizure while waiting for the school bus. He was rushed to the emergency room and then transferred to the University of Iowa Stead Family Children’s Hospital.
While at the UI Children’s Hospital, Jaxton was diagnosed with Batten disease. According to the Cleveland Clinic, Batten disease is a group of rare genetic conditions that cause cells to collect waste instead of getting rid of it.
Jaxton’s mother, Tina, explained that Batten disease affects one in 100,000 kids, as both parents must have the causal gene that is passed down. The disease also commonly affects multiple siblings.
“And a lot of times, families have more than one sibling [affected],” Tina said. “So when they first told us, my husband’s next question was, ‘What about his brothers?’ And they showed us that they were too old to have it, and we would know it by now.”
As Batten disease slowly attacked Jaxton’s brain cells, it led to him losing his ability to walk, speak, and swallow. Tina described the disease as “Alzheimer’s in a child.”
Jaxton has many favorite things, including listening to dogs barking, as well as roaming the hallways while in school.
“He would do his thing in the halls,” Tina said. “And the teachers, when he would be loud, would just be like, ‘Oh, that’s just Jaxton.’ They would shut the door, and some of them would put things outside so he could feel them. He didn’t really have a favorite subject other than just doing what he wants to in school, and they’ve created a sensory room where he can go in and feel things.”
Jaxton also loved to ride his scooter, even when he couldn’t see very well. Tina said that Jaxton would use the edges of the sidewalk to know where he was going. Now, his favorite hobby is listening to music and going for rides.
Tina said the doctors and nurses at the UI Children’s Hospital have saved Jaxton’s life multiple times, and she is also grateful for the Hawkeye football players and how much they enjoyed meeting Jaxton.
“The football players come in, and to me, they’re just young kids too,” Tina added about the Iowa football team. “They’re happy to see them [the kids] and interact, and they take the time to do that. I think they’re genuine when they’re in there, and I think they do have compassion for those kids.”
Tina said that she and her family want Jaxton’s story to inspire others to be patient, not sweat the little things, and find a reason to be kind, because nobody knows what everyone else is going through.
Another one of Tina’s hopeful messages to all who hear Jaxton’s story is simple:
“I always say, if Jaxton can smile, you can smile.”