Monday, December 4, 2023

Rasmussen's encephalitis

A 6-year-old girl with a rare neurological disease recently underwent surgery in Los Angeles that disconnected half of her brain.

Brianna Bodley, who was diagnosed with Rasmussen’s encephalitis in August 2022, is in recovery from the functional hemispherectomy on Sept. 28, according to a GoFundMe page organized by her mother Crystal Bodley.

The National Institute of Neurological Disorders and Stroke (NINDS) describes Rasmussen’s encephalitis (RE) as “a very rare, chronic inflammatory neurological disease that usually affect only one hemisphere (half) of the brain.”

Symptoms include frequent and severe seizures, inflammation of the brain (otherwise known as encephalitis), mental deterioration and the progressive loss of neurological functions such as motor skills, speech and mobility on one side of the body, per NINDS.

According to Brianna’s GoFundMe page, she was diagnosed with the disease after she was hospitalized twice within a month after experiencing several seizures at night.

Amid failure of several medications to stop the seizures, which damaged Brianna’s brain, it was recommended that she undergo the functional hemispherectomy. The surgery disconnects the brain hemispheres from each other, as “the only cure for the seizures caused by RE,” per her GoFundMe page.

“She was [in] pain due to her having non-stop seizures, which are shown in her leg that jerks all day long even when she’s sleeping,” Crystal wrote.

She also told ABC7 that her daughter’s “leg would bend up all the time and she would have trouble walking.”

Consequently, Dr. Richard Aaron Robison of Loma Linda University Health performed the 10-hour operation, telling ABC7, “Just disconnecting [the brain] is enough to stop the disease completely and essentially, potentially cure it.”

"Brianna will still be the same person, even after disconnecting half her brain," Robison explained to the outlet.

As of Oct. 3, Crystal wrote in an update on the GoFundMe page that Brianna’s medical team is focused on “pain management trying to help with her pain after surgery.” The 6-year-old will also start “intense rehab to learn how to walk and use her arm, speech therapy and more.”

According to the page, Brianna will be doing rehab until “she can walk and move her arm again,” but that she “will never get back her fine motor skills in her left hand and her peripheral view in her left eye.”

“She has a very long road of recovery, but she is a strong and determined little girl. I know she will do great things and overcome all of this,” her mother wrote.

No comments:

Post a Comment