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Catonsville 11-year-old battles rare brain disorder

On a sunny Wednesday afternoon, Emily Kolenda sits on the sofa of her living room next to her younger sisters, Colleen, 8, and Megan, 9. The girls are laughing and whispering secrets into each other's ears at their home in West Catonsville, where they live with their parents, Kelly and Jason Kolenda.

Their laughter is a soothing sound for a family that is being tested. And no one is facing a bigger test than 11-year-old Emily.

There is evidence of that struggle in the hair loss from a chemotherapy treatment. But it's not cancer she is facing.

"Sometimes I wish I had cancer," Emily said. "It would be easier."

Emily was diagnosed in January 2012 with a rare brain disorder called acute disseminated encephalomyelitis (ADEM). It's an autoimmune disorder that makes her feel tired and weak.

The disorder damages brain tissue called white matter, which leads to neurological symptoms, such as vision loss, weakness to the point of paralysis and difficulty coordinating voluntary muscle movements, according to National Institutes of Health (NIH) information.

It is characterized by a brief widespread attack of inflammation in the brain and spinal cord, which damages myelin, the protective covering of nerve fibers, NIH information says.

It makes basic actions such as remembering, reading and writing difficult for Emily.

"It really does affect her everyday life," said Kelly Kolenda.

When she found out, Emily said it was "shocking."

And life has been "hard" ever since, she said.

She often gets tired and suffers from headaches, which makes it difficult to attend school and enjoy her favorite activities like dancing, playing outside, reading, swimming, drawing and listening to music. A poster of her favorite singer, Taylor Swift, hangs above the family computer in the living room of the family's home.

"It was a big change in our lives," said Kelly Kolenda. "Life is very unpredictable now."

Kelly said she was often sick as a child and underwent a number of surgeries. She realizes how difficult it can be for a parent.

"It's hard being the mother of a sick child," she said. "Now I know what my mother went through."

The disorder has caused Emily to miss a number of days at Monsignor Slade Catholic School in Glen Burnie. She is able to be there two to three weeks out of the month, Kelly said.

"I get tired when I'm at school," Emily said. "And the teachers have to help me because I miss a lot. Because of all the lesions on my brain, I can't remember as much."

It was a teacher at the elementary school, Loretta Federline, who saw a behavior change and recommended that Emily see a doctor, Kelly said.

Intense treatment

Kelly explained that Emily is being treated like a cancer patient, but her disease is an autoimmune disorder. That is when the body mistakenly attacks and destroys healthy body tissue, according to information from the NIH.

Emily takes an immunosuppressant medication called cyclophosphamide, Kelly said.

"The hope is that by suppressing her immune system, we can stop it from attacking her body, because her disease is a neurological autoimmune disorder," Kelly said.

Joseph Wiley, a pediatrician who is board certified in pediatric hematology-oncology, has been one of the doctors treating Emily at Sinai Hospital of Baltimore City for the last two years.

Emily has an injury to the wrapping of the nerves inside the brain and her treatment involves "interference with the immune system's tissue," which "cripples the illness," he said.

Wiley, medical director of the Herman and Walter Samuelson Children's Hospital at Sinai, routinely treats children with autoimmune disorders. The disease normally affects children and adolescents, but occurs in all ages, Wiley said.

He said Emily's condition is extremely rare. She is the first patient he has treated with the disease, he said, and one of two patients at the hospital currently being treated for ADEM.

"She is the only patient being treated this intensively," Wiley said.

Emily receives treatments at the hospital every four weeks.

Kelly said even with medical insurance, the family spends "thousands of dollars every month" on Emily's medical bills.

The family has received donations from the Paradise Community Association, the Maryland State Troopers Lodge 69 of the Fraternal Order of Police and the Elks of Glen Burnie that have helped with expenses.

"It could bankrupt a family," Kelly said. "Thankfully, our family and friends have been wonderful."

Despite the difficulties, Wiley said he has been impressed with his patient's strength.

"She is a very strong, young girl," Wiley said, adding, "She's a really remarkable kid."

She has been evaluated by doctors at the National Institutes of Health and the Mayo Clinic to make sure the treatments are working properly, Wiley said.

Emily said doctors have told her she may have to do another round of chemotherapy this summer.

Wiley said patients with the disorder either decline quickly and die, or progressively get better, and those affected by it have a shortened life expectancy.

"We have seen something between stabilization and improvement in Emily's health, due to the treatments," Wiley said.

Copyright © 2015, The Baltimore Sun
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