Treatment at UW Health for DeForest boy's rare disease offers hope
DAVID WAHLBERG
Brody Koslowski, 6, center, works with therapist Frances Violante as his brother Colton, 3, looks on at the Koslowskis' home in DeForest. Brody has Batten disease, a rare inherited condition that takes away vision, movement and thinking ability, resulting in premature death. But he's getting the first treatment for it at UW Health.
When their son Brody had a seizure at age 3, Molly and Matt Koslowski of DeForest were dismayed to learn he might have epilepsy.
Brody Koslowski, 6, of DeForest was diagnosed with a rare condition, known as Batten disease, three years ago. A new treatment, delivered biweekly through infusions directly into the brain, can slow or halt, but not reverse, the progression of symptoms.
Molly Koslowski, center, learned in December she has breast cancer, for which she is getting chemotherapy at UW Health. Her diagnosis came just after she quit her job as a health teacher in DeForest to care for her three sons, including Brody, shown with therapist Frances Violante.
Matt Koslowski hand-feeds son Brody, who has a rare disease that typically takes away the ability to swallow. Brody has a feeding tube, but his parents are trying to maintain his chewing and swallowing abilities. “If he uses it, he’s not going to lose it as quickly,” Matt said.
Matthew Koslowski holds his son Brody as UW Health staff prepare to give the boy an infusion directly into his brain at UW's American Family Children's Hospital. Shown are nurse Jill Shafranski, nurse practitioner Alexa Beversdorf and nurse Jill Smith.
Brody Koslowski, 6, of DeForest, shown with father Matt, has had 76 infusions, delivered directly into his brain, for Batten disease, a rare neurological condition. After Brody received the first infusion in Chicago in 2019, a UW Health team learned how to provide the biweekly treatment in Madison.
Nurse practitioner Alexa Beversdorf said it's not easy to access ports in the heads of wiggly children, such as patient Brody Koslowski, 6. "They're moving targets," she said.
Matt Koslowski holds Brody as medical workers prepare to give the boy an infusion in his brain. "Sometimes he just doesn't like to be poked," Matt said. "Once it's in and going, we're fine."
Brody Koslowski, with father Matt, has lost most of his vision from a rare neurological condition called Batten disease. But he enjoys playing with cars and trucks, and likes listening to movies, such as "Finding Dory."
Brody Koslowski, 6, center, works with therapist Frances Violante as his brother Colton, 3, looks on at the Koslowskis' home in DeForest. Brody has Batten disease, a rare inherited condition that takes away vision, movement and thinking ability, resulting in premature death. But he's getting the first treatment for it at UW Health.
Matt Koslowski hand-feeds son Brody, who has a rare disease that typically takes away the ability to swallow. Brody has a feeding tube, but his parents are trying to maintain his chewing and swallowing abilities. “If he uses it, he’s not going to lose it as quickly,” Matt said.
Molly Koslowski, center, learned in December she has breast cancer, for which she is getting chemotherapy at UW Health. Her diagnosis came just after she quit her job as a health teacher in DeForest to care for her three sons, including Brody, shown with therapist Frances Violante.
Matthew Koslowski holds his son Brody as UW Health staff prepare to give the boy an infusion directly into his brain at UW's American Family Children's Hospital. Shown are nurse Jill Shafranski, nurse practitioner Alexa Beversdorf and nurse Jill Smith.
Brody Koslowski, 6, of DeForest, shown with father Matt, has had 76 infusions, delivered directly into his brain, for Batten disease, a rare neurological condition. After Brody received the first infusion in Chicago in 2019, a UW Health team learned how to provide the biweekly treatment in Madison.
Nurse practitioner Alexa Beversdorf said it's not easy to access ports in the heads of wiggly children, such as patient Brody Koslowski, 6. "They're moving targets," she said.
Matt Koslowski holds Brody as medical workers prepare to give the boy an infusion in his brain. "Sometimes he just doesn't like to be poked," Matt said. "Once it's in and going, we're fine."
Brody Koslowski, with father Matt, has lost most of his vision from a rare neurological condition called Batten disease. But he enjoys playing with cars and trucks, and likes listening to movies, such as "Finding Dory."
