For Years, Myat Haggart’s parents have been searching for answers. Myat, a 10-year old living in New York City, has been blind since age 5. He also wears bilateral hearing aids to help with hearing loss and has other health issues.
In fall 2015, after testing showed Myat had a rare genetic mutation, his mother, Kara Bohnenstiel, learned something extraordinary. An internet search revealed that researchers at the University of Iowa had been studying the same mutation in their lab. They had also treated other patients with an eye disease similar to Myat’s.
Kara immediately e-mailed one of the doctors who had authored the study. In less than 48 hours, she and her husband, Scott Haggart, were on the phone with Alex Bassuk, MD, PhD, a pediatric neurologist at University of Iowa Stead Family Children’s Hospital, and Vinit Mahajan, MD, PhD, an ophthalmologist now at Stanford University. They spent two hours one Sunday afternoon learning about Myat and talking about their research.
“Obviously they are trying to learn more about the science [behind this], but they are kind-hearted people too,” Kara says.
Kara and Scott were excited about the prospect of bringing their son to UI Stead Family Children’s Hospital — so excited that they switched insurance providers so Myat could receive care in Iowa City. During a school break in February, they came to UI Stead Family Children’s Hospital for appointments and a short hospital stay. Their experience exceeded expectations —from a medical standpoint and an emotional one.
“He had so many amazing, positive experiences,” explains Kara.
Treating Myat’s condition
While at UI Stead Family Children’s Hospital, Myat underwent a series of tests.
“We are trying to think of him holistically,” says Bassuk. “We were trying to look for inflammation in other parts of his body.”
The team believes that inflammation is responsible for Myat’s hearing loss and other conditions. Indeed, their research indicates that Myat’s mutation could cause problems throughout a person’s body. So far, though, other patients with the mutation have shown only symptoms of eye disease.
Pediatric rheumatologist Polly Ferguson, MD, also met with Myat and his parents.
“The biggest thing for me is to save his hearing,” says Ferguson.
Based on their research and an examination of Myat, the doctors started him on anti-inflammatory therapies. It’s too early to tell what the effect the treatment will have, but everyone is cautiously optimistic.
“I am so excited about the new treatment protocol development at the University of Iowa,” Kara says