No child should have to go through what Katie Lawrence is enduring now.
The 8-year-old faces frequent doctors appointments and visits to the hospital for treatment and has to take multiple medications and supplements daily.
It’s a nightmare for her and her parents, Justin and Erin Lawrence of North Vernon.
Katie, a student at Liberty Christian Academy in Seymour, was diagnosed in January with pediatric acute-onset neuropsychiatric syndrome, or PANS, an autoimmune disorder that causes her immune system to attack her brain, leading it to swell.
It all started when Katie got sick with a virus in November. She got severely dehydrated and was in pain because her glands behind her appendix were inflamed.
At that point, Erin said they started to notice some big changes in Katie’s personality and behavior.
She was paranoid, scared and nervous and would lash out in bursts of anger, unable to control what was going on in her brain. She didn’t understand what was happening to her.
Neither did Erin or Justin.
"She started throwing herself on the ground and throwing temper tantrums like a 2-year-old," Erin said.
This wasn’t normal behavior for Katie, and it worried her parents.
"She has always been very much ahead of her age group, mentally and in communicating with others," Erin said. "I was like, ‘What in the world is going on here?’"
Katie began running away from her parents and couldn’t stand for them to look at her.
"If you looked at her, she would freak out and just keep screaming," Erin said. "It was very strange, and we knew something bad was going on."
But it didn’t just affect Katie’s behavior.
There also was severe pain, especially in her legs. Erin took Katie to a doctor and was told it was growing pains.
But the symptoms just kept getting worse. Some mornings, Katie would not be able to get up and walk to the bathroom because her legs, knees and hips hurt so bad.
What the Lawrences didn’t know was all of the symptoms were connected.
"They came on separately," Erin said. "That’s what was so hard for the doctors. They weren’t looking at them together."
The Lawrences were finally able to get Katie into a specialist in Carmel, who diagnosed her with PANS.
As if that wasn’t enough, Katie also has specific antibody deficiency, or SAD, where her body does not produce antibodies for illnesses. She also has complications from low immunoglobulin A and Lyme disease, which is caused by a bacteria spread by ticks.
Once they got her started on some medications, they started to see improvement. But getting Katie to take her medicines isn’t always easy.
"It can be very challenging to get an 8-year-old to understand that she needs to take these medications every day, especially when her brain is being attacked and she’s not in her right mind," Erin said.
Her illnesses require her to constantly wear a mask covering her nose and mouth to prevent her from picking up germs.
It’s frustrating, overwhelming and scary for both Katie and her parents.
With the right type of treatment, Katie’s illnesses can be managed. Each IVIG treatment is $17,000, however, and is not covered by the Lawrences’ insurance.
But the family isn’t giving up, and they are getting support from Leaving the 99, a local ministry founded by Jason and Janet Davis of Seymour. Janet is Katie’s teacher at Liberty Christian.
The ministry is hosting a benefit for Katie from noon to 4 p.m Saturday at Shields Park in Seymour.
The family-friendly event will include food, including pulled pork by Hog Wild Barbecue, and live music from Wayne Deaton, Troy Lee Jackson and the First Baptist Church of Crothersville worship team, Lori Deaton, the Lisa Herald Family Band and others. There will be a silent auction and raffles for donated prizes, face painting, balloon animals and games for kids.
All proceeds will go to help pay Katie’s medical bills.
Earlier this month, Leaving the 99 organized a car wash for Katie and Beauty from Ashes Tattoo Parlor in Crothersville conducted a flash tattoo sale, raising more than $4,200 for the cause.
Erin said she can’t believe the support they are getting from those in Leaving the 99. She never reached out for help before because they didn’t want to admit they needed it, she said.
"When I tell these people ‘thank you,’ it doesn’t do it justice," she said. "I love them, and I love their hearts. I’m amazed that these people who are trying to get their lives straightened out have turned around and done whatever they can for this child. It blows me away what they have done."
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What: Katie Lawrence benefit
When: Noon to 4 p.m. Saturday
Where: Shields Park in Seymour
Details: Food, live music, silent auction and raffles, face painting, balloon animals and kids games
Information or to donate: Call Janet Davis at 812-216-2816