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Baby Joscelyn Dempsey fights back from 5 brain surgeries

Joscelyn Dempsey at home with her mom, Jennifer.
Two-year-old Joscelyn Dempsey may not talk yet, but her favorite T-shirt is a wisecracker.

The tot from Mount Dora underwent a series of radical brain surgeries — five in all — during the past 12 months, in which specialists at Florida Hospital for Children opened her skull and removed pieces of her brain until the entire left side was gone or disconnected.

"I train neurosurgeons," her T-shirt reads.
Pictures: Too much muscle

Her parents, Jennifer and Michael Dempsey, opted for the risky intervention a year ago because the left side of Joscelyn's brain was abnormally larger than the right and triggered uncontrollable, potentially deadly seizures.

Each delicate surgery raised hopes, if only briefly. The seizures slowed or would stop for days. Was she cured?

Then, suddenly, an answer would come. And seizures shook her again.

"We had some disappointments," said Dr. Ki Hyeong Lee, medical director of the Comprehensive Epilepsy Center at Florida Hospital for Children. His team of experts and neurosurgeons consulted specialists from Cleveland to California about the confounding case of the little girl.

In February, seven months after the first surgery, Jennifer Dempsey posted an entry on "Joscelyn's Journey," an online journal about her daughter's fight with hemimegalencephaly, the long medical term for her condition, which is considered a kind of epilepsy.

"We have technically lost every battle in this war thus far," the mom wrote. "We have certainly weakened the enemy along the way. Joss' seizures aren't nearly as frequent or severe as they were prior to her hemispherectomy but the fact remains that epilepsy still has the upper hand..."

In another entry, she wrote, "To be completely honest, right now, life looks rather sad and bleak."

Doctors at Florida Hospital had used a powerful imaging tool to peer inside the baby's head to seek out and track the seizures. They believed the episodes were erupting from a small piece of malformed tissue that was very close to Joss' hypothalamus, the brain's pearl-sized control center.

Lee said he had previously suspected the tissue was the root of the seizures, but extracting it was very risky.

The hypothalamus controls respiration, among other essential functions. "Once you take out the brain, you cannot put it back," Lee said.

Before agreeing to a fifth surgery, the Dempseys sought second and third opinions from experts across the country who concurred with the assessments of Lee and neurosurgeon Dr. James Baumgartner. Lee said he warned the parents about a more disheartening possibility.

If the seizures were rooted in the right side of Joss' brain — her "good" half — there would be little hope of a full recovery, Lee said. With the left brain gone, the child's ability to think and walk and speak depended solely on the right hemisphere. She couldn't lose that half of her brain, too.

The procedure Feb. 27 took 11 hours.

Since then, Joss has been seizure-free for four months, the longest such stretch of her life. She does not walk, but "combat" crawls. She speaks just one word, "Momma," but clearly dismisses therapists, newspaper reporters and other annoyances with a wave of her left hand.

"We take such joy in her every accomplishment, big or small, but we don't want her to be defined strictly by what she does or doesn't do," her mother said. "We want her to be appreciated for who she is."

She loves Elmo, hanging upside down in her dad's arms, Kindermusik classes and kicking her legs in the pool.

Her doctors are hopeful but won't declare the latest surgery a success until she is seizure-free for six months.

"The whole idea of recovery is possible when you stop seizing. It's proven," Lee said. "There is no bad influence from the left hemisphere anymore. The question is: Does the right [side] have enough function? ... It's not a slam dunk, but God willing, I think that's going to happen.

"I have no doubt she is going to be able to learn. My gut feeling is she's going to be able to sing a song in the next few years."

And if that happens, Lee thinks the slogan on Joss' T-shirt should be changed to: "I trained neurosurgeons."
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