Hunlock Creek girl faces medical challenges of ‘pseudotumor cerebri.’

Last updated: July 01. 2013 11:15PM - 2965 Views
By - mbiebel@civitasmedia.com - (570) 991-6109

PETE G. WILCOX/THE TIMES LEADEREmilee Hillard and her dog, Bentley, share a moment in the backyard of her family's home in Hunlock Creek.
PETE G. WILCOX/THE TIMES LEADEREmilee Hillard and her dog, Bentley, share a moment in the backyard of her family's home in Hunlock Creek.
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What: Hope 4 Emilee fund-raiser

When: noon July 13

Where: Country Gentleman, 1788 Main Road, Hunlock Creek

Admission: $10 per carload

More info: SpecialSpacesNEPA at facebook.com or 570-212-9728

Talk to Emilee Hillard about her animals, and the 11-year-old girl from Hunlock Creek is all smiles.

She’ll tell you her cat is named Bella in honor of the ‘Twilight’ character, and she calls the rabbit Pebbles because, um, there’s a lot roughage in the bunny’s diet and the result looks like tiny stones.

“She eats a lot of carrots,” Emilee said.

“That’s why she’s so fat,” Emilee’s 13-year-old brother, Jarrid, interjects. “Me and Bryce tease her all the time, she’d make a good stew.”

Rabbit-stew jokes from two older brothers seem like part of normal life for any little girl who dreams of being a veterinarian, as Emilee sometimes does.

But Emilee’s life isn’t what most people consider normal.

“She’s had 21 surgeries in a year and four months. She’s had 15 spinal taps. She takes lots of meds,” Emilee’s mother, Amanda Hillard, explained last week. “She started losing her peripheral vision. Sometimes her legs just go out from under her and she falls.”

When Emilee was 7 years old, doctors at the Children’s Hospital of Philadelphia diagnosed pseudotumor cerebri, a condition that occurs when intracranial pressure builds inside a person’s skull. As the Mayo Clinic website explains, the symptoms mimic those of a brain tumor, but no tumor can be found.

“It sounds terrible to wish your child had a tumor,” Amanda Hillard said, “but if she did, at least there would be a way to treat it.”

There is no known cause or cure for pseudotumor cerebri, which afflicts about one person in 100,000.

Most of those afflicted are obese women in their child-bearing years, but Emilee was 7 years old and weighed only 46 pounds when her diagnosis came, her mother said, noting her daughter is a rarity even in this rare group.

“Cluster migraines at age 7 is not normal,” Amanda Hillard said, adding it took a long time for Emilee to get her condition diagnosed — after a 45-day hospital stay.

Medications, surgeries, a shunt that sends fluid from Emilee’s head to her stomach, and lots of time spent lying flat — these are the ways the young patient copes.

Does she ever feel angry about all this?

The girl nodded, almost imperceptibly. It was hard giving up going to school, being a Lake-Lehman cheerleader and tumbling with Northeast Gymnastics.

“It affects everyone in the family,” Amanda Hillard added. “We’ve all given up something.”

While mom gave up her job with Luzerne County to spend time with her daughter, dad Berton Hillard gave up his auto-repair business so he could return to a job as a diesel mechanic and get health benefits. Jarrid gave up baseball because it was too hard for him to get to practice.

But nobody’s complaining.

“We all pull for her,” Amanda Hillard said.

Also pulling for Emilee is a group called Special Spaces. The program got its start a few years ago as a Leadership Wilkes-Barre project and since then has redecorated bedrooms for several local children who were seriously ill — people like Audrianna Bartle of Hazleton, a lover of rainbows who lost her cancer battle at age 6.

“They were like Team Emilee and Audrianna,” Amanda Hillard said, explaining the girls met in the hospital and became friends.

“When you lose that other half of you …” Amanda Hillard began, her voice trailing off. “People warned us not to get close. We didn’t mean to fall in love with a little girl who was terminal, but we did. Now she’s Emilee’s guardian angel.”

“She died the day after my birthday,” said Emilee, who is a Valentine’s Day baby.

When members of Special Spaces first met Emilee, they thought about redoing a bedroom for her. Now the idea has expanded to include making her family’s home handicapped accessible because eventually she may need a wheelchair.

“We’re looking for a lot of raw materials — lumber, labor, masonry, architects,” said Special Spaces volunteer Luke Matthews from Warrior Run. He said there are lots of ways to help, and interested people are welcome to check out the group’s Facebook page or call 570-212-9728.

“It’s not about the quickest and easiest way to get a room done,” Matthews said, explaining Special Spaces volunteers like to “come and meet the children, have that spark of a relationship.”

The group will sponsor a fund-raiser called Hope 4 Emilee at Country Gentleman restaurant in Hunlock Creek. The event, set to begin at noon July 13, will include food, activities and games for children and adults. There will be a basket raffle and, possibly, pony rides. Jarrid expects to be in charge of the dart-throw, and Emilee wants to be in charge of the fish-bowl.

Admission will be $10 per carload.

“That’s legal carload,” Amanda Hillard said with a smile, conjuring images of too many people squished into a car, sitting on each other’s laps or hiding in the trunk.

Emilee smiles, too. But soon she leaves the room and returns with a pillow, positioning it on the chair behind her back.

“This is a child who won’t ask for pain medication in front of people,” her mother said later. “She doesn’t want people to pity her.”

“People ask how I can be so strong,” Amanda Hillard said. “Honestly, I’m not strong. She’s where I get my strength.”

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