Young girl's medical battles unite family

TELL CITY - In the months leading up to the birth of her second child, Holly Paauwe knew something wasn't right. She just wasn't sure what it was.

As far as she and her husband, Jon, knew nothing was wrong since tests regularly run during pregnancies came back normal. So when Holly went into labor with their daughter, Avery, July 17, 2005, the nurses told her everything was OK. But after Avery was born, something was obviously wrong.

She twitched a lot, something Holly said she didn't experience with her son, Caiden, then 4. After nurses suspected seizures, a CT scan was taken and she was diagnosed with hemimegalencephaly, a rare neurological condition in which one half of the brain is larger than the other.

She was transferred to Riley Children's Hospital in Indianapolis. When they asked doctors there if Avery would walk or talk, the professionals said they didn't know. They also didn't know what caused her to develop HME except for maybe a genetic mutation during fetal development, Holly said. As a result of this condition, Avery suffered frequent seizures.

To try to reduce their number, the Paauwes learned about a procedure called hemispherectomy that removes half of the cerebral cortex.

The right side of Avery's brain is normal, but it is the left side of her brain that was causing problems. At only a little over a year old, Avery had her first surgery Sept. 28, 2006. The surgeons first performed a functional hemispherectomy. The goal was to disconnect the two halves and get the right side to take over the duties of the left.

Unfortunately, only four days after the operation, Avery started seizing so bad she was arching her back in pain. "I knew she had to go back for another surgery," she said. Oct. 16, 2006, Avery underwent an anatomical hemispherectomy in which doctors removed "hot spot" brain tissue, areas where they believed the seizures were originating.

For eight months after the second surgery, Avery had no noticeable seizures. In May or June of this year, however, Jon and Holly started noticing her eyes moving more rapidly. By the time August rolled around, they were noticing more problems. They later learned the left cortex is still sending out signals and starting to cause seizures despite the anti-seizure medications Avery takes.

Now Avery will have a third surgery with efforts focused on the occipital lobe. "They weren't able to do anything to the occipital lobe (in the second surgery) because they were afraid of blood loss," Holly said, adding that's where doctors believe the most activity is going on. As of press time the family did not know when the next surgery would take place.

Support System

When Jon and Holly first found out about Avery's diagnosis, they didn't know anything about the condition but have kept up with new treatments.

A Web site, located at www. averypaauwe.com and the blog, thepaauwe-report.typepad.com, offers information about Avery, her progress, pictures and advice for others. To help with medical expenses, the family will hold a benefit dance with food, entertainment, a raffle and half-pot Jan. 5 from 7 to 11 p.m. at Tell City Moose Lodge 1424. A lifetime assistance fund has been set up for Avery at Old National Bank.

Contributions may be sent to The Avery Paauwe Lifetime Assistance Fund, P.O. Box 159, Tell City, IN 47586 or any Old National Bank branch.