Multiple Sclerosis and Neuroimmunology Center

Patient Stories | Addison and Multiple Sclerosis

Addison was a healthy 7-year-old girl when she left for school one day in the fall of 2021. She’d been sick a few weeks earlier with nausea and vomiting and had developed a rash on her stomach, but the rash had faded, and so had any concerns Addison’s mom, Whitney Farley, had surrounding it.

That’s why nothing could have prepared Whitney for the news she’d receive by the end of that September day: Not only was Addison blind, but she’d be blind forever.  

A Confusing Case

The first sign something was wrong came that morning. Addison had told her second grade teacher that she couldn’t see very well when she was asked to read something. Reading, of course, was a major part of the curriculum that year, and when the teacher called Whitney to tell her what her daughter had said, Whitney asked her to urge Addison to try.

"I said ‘tell her she can do it and she needs to try her best,’” Whitney said. “I thought Addison was using it as an excuse not to read. I felt horrible after the fact.”

The second sign came later in the day, when Addison’s teacher let Whitney know that Addison wasn’t writing correctly, and the teacher was starting to get worried. Whitney understood why when Addison got home.

“I noticed she was holding on to the car to come to me,” she recalled. “Her eyes were completely dilated, and she couldn’t see. Her eyes looked super strange. One was looking off in the wrong direction.”

Whitney rushed Addison to the emergency department. After bloodwork and multiple tests, an eye doctor came into the room and told Whitney it looked like Addison had multiple sclerosis, a disease that develops when the body’s immune system eats away at the protective covering of the nerves. At the time, Addison couldn’t see at all, and the doctor told Whitney she’d never recover her vision. 

“She was completely healthy when I sent her to school that morning, and then, suddenly, she’s 100% blind,” Whitney said. “It was terrifying. I was completely distraught.”

Addison was prescribed medication to reduce the effects of inflammation. Different specialists kept coming in and out of the room, however, throwing out different diagnostic possibilities but never coming to a consensus on a treatment plan, Whitney said. 

At one point, a neurologist came into Addison’s room and told Whitney that she and the other specialists couldn’t agree on how to move forward. She said one doctor thought Addison needed a plasma exchange therapy, called plasmapheresis, to further reduce her inflammation. The neurologist, on the other hand, thought Addison should go home first to see if she improved. 

“I said, ‘I’m glad I don’t have to make that decision,’” Whitney said. “The neurologist replied, ‘That’s why I’m here. You do have to make that decision.’”

That’s when Whitney knew she needed a second opinion and made an appointment at Cincinnati Children’s.

A Path Forward for Addison

Talking with a pediatric specialist in neuroimmunology at Cincinnati Children’s was the first time Whitney felt completely heard about her daughter’s condition.

“I got a ton of information,” she said. “The doctor listened. She made me feel like someone truly cared and was invested in Addison.”

Soon, Addison had a team of specialists dedicated to her care, including a pediatric neuroimmunologist, a neuro-ophthalmologist and a rheumatologist.

“They were very informative, and they were actually communicating with one another and coming into the room together,” Whitney said. “Everyone who walked into our room was kind and listened to Addison and to me. They’d explain things to both of us and answer our questions, so we knew what was going on, and why, at all times.”

At Cincinnati Children’s, Whitney was also able to receive support from her family. “I could finally take a nap or a shower while my dad came in to spend time with Addison,” she said. “That was huge.” 

Addison received several rounds of plasmapheresis. She also received some good news from one of her doctors.

Veeral Shah, MD, PhD, a pediatric neuro-ophthalmologist in the Division of Pediatric Ophthalmology, visited Whitney and Addison on his day off to let them know that Addison wouldn’t be blind forever. “I wanted her to know that this would get better,” he said.

Working with the other specialists on Addison’s care team, Dr. Shah also came to a probable diagnosis: neuromyelitis optica (NMO), a disease of the central nervous system that develops when the immune system commonly attacks the nerves in the eyes and spinal cord. 

NMO tends to cause inflammation in the brain stem, which is the part of the brain that stimulates our nausea and vomiting response. That’s most likely the reason Addison initially experienced vomiting, Dr. Shah explained.

It’s also the likely culprit behind the rash, said Ekemini Ogbu, MD, MSc, a pediatric rheumatologist and director of Neuroinflammatory Disease Services in the Division of Rheumatology.

“These types of disorders can affect various parts of the body, and we have to use patterns and clues to figure out the primary cause of what’s going on,” Dr. Ogbu said. “Working with a multidisciplinary team helps us get as comprehensive a picture as possible to the extent of the disease and how we can best treat it.”

Addison Benefits from Multidisciplinary Care Approach

Addison’s treatment falls under the umbrella of the Cincinnati Children’s Multiple Sclerosis and Neuroimmunology Center, a dedicated hub for children with neuroinflammatory conditions.

The center, created in 2021, combines a coordinated team of experts with cutting-edge treatments and a compassionate approach to care, Dr. Ogbu said. Specialists include neurologists, neuroimmunologists, neuro-ophthalmologists, rheumatologists, neuroradiologists, geneticists, psychiatrists, psychologists, and pathologists.

“Sometimes these types of diseases take a while to manifest what they truly are,” Dr. Ogbu said. “And sometimes there can be profound manifestations from the disease that can be devastating before we’re able to see the whole picture. We don’t have the benefit to watch and wait and see. We have to act quickly. The center allows us to do that.”

In Addison’s case, the definitive treatment decisions made by her care team at Cincinnati Children’s allowed her to not only recover most of her eyesight, but also return to a normal childhood.

While she’s receiving treatments for her condition and seeing various members of her care team regularly, Addison, now 9, is also playing volleyball, singing, and dancing, and dreaming of becoming a writer one day. She also gives presentations at school, so people better understand what she’s experiencing.

Dr. Shah said he couldn’t be happier that Addison is where she is today.

“Our goal is to get children healthy but to keep providing them with continued care, so they get all the services they need to get back to school and enjoying life. Addison is doing all that. With all that she’s been through, it warms my heart.”

(Published November 2023)