Painting a storyPublished 6:06am Saturday, November 24, 2012
When Jessica Peppers was diagnosed with Arnold-Chiari malformation in July 2009, she said she wouldn’t wish what she went through on her worst enemy.
But little did she know that a mere three years later, her own 6-year-old daughter, Jerica, would be diagnosed with the exact same thing.
The condition, which is described as a birth defect where the bone at the base of the brain is not fully developed and the brain goes down into your neck, can cause a myriad of problems from loss of balance and coordination to migraines to unexplained pain and numbness in different parts of the body to loss of vision to muscle weakness and many other problems.
For Jessica, her Chiaris symptoms came in the form of severe migraines that would sometimes cause her to lose chunks of time.
“My Chiaris was misdiagnosed as migraines for a long time,” Jessica said. “I had the migraines but I started having the other issues, too, like loss of muscle control and loss of vision at night.”
Jessica had to drop out of college in 2004 because she was taking night classes and she couldn’t see to drive there and many of her motor functions became uncontrollable.
She knew there was more going on than just simple migraine headaches, but the doctors couldn’t explain her symptoms and she was out of any other viable explanations – that is, she thought she was out of explanations.
One day in 2009 when Jessica and her husband, Charlie, were living in Huntsville with Jerica, she had a conversation with a family friend affectionately known as “Momma Rhonda.”
“She told me about the brain surgery her daughter was having because she had Arnold-Chiaris,” Jessica said. “She told me my symptoms sounded a lot like what her daughter has dealt with and told me to get an MRI.”
The MRI that Jessica received confirmed that she did indeed have Arnold-Chiaris malformation, and she underwent brain surgery on Oct. 23, 2009, to try to alleviate the condition.
“I’m technically ‘fixed’ since I had my brain surgery, but I’ll never stop being a Chiaris patient,” Jessica said. “I still have lasting effects and irreparable damage from not catching it soon enough and that’s something I’ll always have to deal with.”
Knowing what a terrible thing it was to go through, Jessica said she just refused to believe her daughter might be going through the same thing when she started having symptoms earlier this year.
“Jerica had been having severe leg cramps and I just dismissed it as growing pains,” Jessica said. “I knew it was one of the symptoms of Chiaris but it never registered with me.
“On the first day of first grade this August, we were driving to school and she asked me, ‘Momma, why do I always have leg pain and feel like ants are crawling on my fingers?’
“Right then it just clicked. We went on to school and took pictures and she went on to class, but I came back home and called the pediatrician and got her an appointment.”
Jessica, Charlie and Jerica arrived at Brightstarts Pediatrics in Madison shortly after she made the first call, and Jerica’s pediatrician, Dr. Jitendra Jain, ran tests and did blood work, which all came back fine, so he scheduled Jerica for an MRI.
“When the MRI results came back, they sent them directly to a neurologist, which made me suspicious that something was not right,” she said.
Jessica said their next stop was to visit Dr. Martina Bebin, a neurological specialist at UAB.
“She had Jerica walk a straight line and she couldn’t; she had her close her eyes and touch her nose and she couldn’t; she had her stand on her heels and she couldn’t,” Jessica said. “My heart sank because those were the exacts tests I had gone through.
“I just sat with my mouth open and Charlie was looking at me with wide eyes. We couldn’t believe it.”
Jessica said the nurses took Jerica to color while Dr. Bebin went over the MRI scans.
“I noticed immediately that her scans looked just like mine. I knew she had Chiaris before the doctor even had to say anything.”
Jessica said they will go to see a neurologist on Dec. 19 to find out what options they have in treating Jerica’s Chiaris and if brain surgery like Jessica’s will be necessary.
In the meantime, Jerica still carries on each day like most any other 6-year-old child even though she has difficult symptoms that sometimes get in the way.
She likes to play with her younger brother, Colt, she enjoys playing with her friends, and she loves to paint, which is something else she has in common with her mom.
Jessica has owned and operated Peppers Art Patch on U.S. 43 for over a year and has enjoyed running a place where people could paint and be free to express themselves, which was a big part of how she coped with her Chiaris symptoms.
However, as much as she has loved running the storefront business, Jerica’s recent diagnosis and Jessica’s enrollment in college fulltime have led she and Charlie to make the decision to close the store at the end of December and have her strictly run her painting business from home after the first of the year.
“Having the store has been great because I’ve gotten to meet so many wonderful people,” Jessica said.
“But I know there will be many doctor’s appointments in our future and I want to be at every one of those and be there whenever Jerica needs me.
“I’m also in school, so with these demands on my time, it just didn’t make sense to keep the store where I would be tied down to being there at certain hours.”
Jessica said she still planned to do private parties in people’s homes and work from a shop she has set up at her own home.
“I think that will be the best decision for our family right now,” she said, “but I want to thank all the customers I’ve had over the last year for making Peppers Art Patch so successful.
“I’ve enjoyed every minute and I hope I’ll still see some of these people even though the business will be changing.”
Peppers said she also planned to spend some time bringing awareness to Arnold-Chiari malformation since it’s not widely known about but can affect people without them even knowing about it.
“They haven’t proven for sure what causes Chiaris and there are many symptoms, so it can often be misdiagnosed like mine was for so many years,” she said.
“My diagnosis was scary enough, but with Jerica’s diagnosis, I just feel the need to let people know about this condition and bring awareness so others can get treated if they have it.
“If it hadn’t been for Momma Rhonda telling me about it and telling me that my symptoms sounded similar and that I should go get an MRI, I probably wouldn’t be alive right now.”
Jessica said there are organizations such as Zipperheads for Chiari, named after the scar Chiari patients receive after brain surgery, that try to raise awareness and she has found comfort in discussing the everyday trials and battles with other Chiari patients.
“Even if our story is seen by just one person who has similar symptoms and is able to receive a proper diagnosis, I feel like we’ve done our part,” Peppers said.