Though Chiari malformation affects one in 1,000 people, Tonya McKee, 31, of Dowagiac, was diagnosed with the neurological disorder in 2004, and two of her three children have it.

“It’s a birth defect. It’s hereditary” where the bottom of the brain, the cerebellum, descends from the skull and crowds the spinal cord, applying pressure on both the brain and spine, she said Tuesday.

McKee is starting a support group, Chiari Crusaders of Southwest Michigan, Nov. 13 which will meet the second Saturday of each month from 3 to 5 p.m. at Zeke’s and marching in the Christmas parade Dec. 3 to heighten awareness.

The Chiari Crusaders will also walk in Paw Paw’s parade on Saturday, Dec. 4.

“Sunday, my pastor better just love me if I can’t make it in. I may be in bed all day. I’ve had a headache for the last four days,” Tonya said.

“We’ve got 14 on our list” for the support group.

“We’ve got them coming from as far as Dalton,” northwest of Muskegon. “We’ve got a lady coming from Jackson. Chiari has a walk, like breast cancer awareness or Relay for Life. We had a walk Sept. 18 in East Leroy to raise money for Chiari awareness. I met tons of people. There had to be a hundred there with Chiari.

“I had Googled it, and that’s how I met my friend, Lisa, the other co-founder of the group. I was talking to a lady in Wisconsin and she said there’s (a walk) in Michigan. There were actually two. One was over by Adrian and the one Lisa does in East Leroy.”

With Lisa in Decatur and Tonya in Dowagiac, “We hope to move (a walk) to Russ Forest or even here in town. We want to move it closer to home. Lisa and I have been tied at the hip ever since. She’s had surgery. She still gets headaches, but not as bad, and she still has a job. I can’t work. I have kids with it. She doesn’t.

“There’s a whole family of Chiari people out there. We’re not by ourselves. The lady from Jackson, her boy’s having surgery at the Cleveland Clinic. I’ll get someone to drive me there because I feel I need to support that family. They can have all the support from family and friends, but I offer a different support because I know the pain and suffering and what they’re going through. The mom doesn’t have it.”

McKee, a 1997 Marcellus graduate, lives on Jefferson Street, where her family moved almost four years ago.

Her children attend Cassopolis schools, though her son who needs brain surgery played rocket football in Dowagiac.

As proof Chiari affects everyone differently (www.conquerchiari.org), the size of the malformation is unrelated to the severity of symptoms, which most commonly are severe headaches, usually in the back of the head, which are made worse by activities such as straining, coughing, sneezing or bending over.

McKee, who used to work at a nursing home in Three Rivers, said she can no longer pop open a can of soda.

There is no single test to say whether someone should have surgery.

Many doctors are unfamiliar with the condition, so people often go years without proper diagnosis.

“People always say, ‘Oh, you’re just complaining,’ ” McKee said. “That’s why we’re trying to get awareness out because a lot of people don’t know what it is. I’ve been lucky to find someone in Decatur who had it and had surgery for it already. Through (Lisa) I’m meeting tons more people. They’re out there.

“Severe migraines are a main symptom. You feel tired all the time. My balance is off a lot. I fell two weeks ago and tore ligaments in my ankle, but I can’t be on crutches because my balance is so bad I fall instead of them helping me. The pain is unreal. You can have a shooting pain in the middle of your leg for five minutes caused by Chiari. Where your cerebellum comes down into your neck, you have all your feelings and sensory issues, and it just goes crazy. That’s the way I explain it. I will start stuttering when I get real nervous or wound up. At church Sunday, I was trying to read a Bible verse out loud and I couldn’t get the easiest word ‘set’ out. My husband had to finish reading for me. I have short-term memory loss. If I do not write down every little thing, I’m not going to remember. I’ll have that feeling that I’m supposed to do something, but I’ll never remember what it is.”

Most patients suffer from five or more symptoms.

It is not known why surgery fails 20 percent of the time.

Additional Chiari symptoms include balance problems, pain and weakness in the arms and legs and trouble speaking and swallowing.

Chiari is diagnosed through a combination of MRIs (Magnetic Resonance Imaging), a neurological exam and other tests.

If symptoms are bad enough — or getting worse, like McKee’s — decompression surgery is usually performed.

Surgery, performed by a neurosurgeon, involves removing part of the skull and spine, and sometimes sewering a patch into the brain’s natural covering.

While precise data is not available, about half of patients become symptom-free following surgery.

Another 20 percent to 30 percent improve significantly.

About 20 percent experience no relief or worsen.

In some people, Chiari can lead to another serious condition, known as syringomyelelia, where a fluid-filled cyst develops inside the spinal cord.

It is believed the malformation is congenital — people are born with it.

Symptoms can develop at any age, but commonly become noticeable either in childhood or in a person’s early 30s.

Chiari Type II, a more serious form of the malformation, which Tonya has, is associated with Spina Bifida.

Someone with Chiari may not be able to bend over, lift heavy objects, stand or sit for any length of time, walk very far, drive a long distance, work on a computer without pain, exist in a noisy environment, engage in strenuous activities such as sports or perform household chores or mowing.

Chiari is also known as Arnold-Chiari, ACM, ACM I, ACM II, CM, tonsillar ectopia and hindbrain herniation.

“I’ve made it my mission to inform as many people as I can,” she said, “especially now that my son has to have brain surgery. I’m supposed to have surgery, but I don’t have insurance, so I live day to day, stressing through it. My daughter (Jordan, 13) has it milder and her spinal fluid flows good with no cysts. She has headaches, so maybe as she gets older…”

Tonya tears up.

Zachary, 11, has a cyst, necessitating Thursday’s trip to Ann Arbor to schedule brain surgery.

“He’s clumsy, but he plays rocket football for Dowagiac. He gives his heart and we’ve had some really good coaches here in town who have learned about it, helped him along and let him be part of the team.”

In 2004, when she was in her mid-20s, McKee was sent for an MRI for severe headaches by a Kalamazoo neurologist.

She believes her father may have Chiari, but neither of her parents was familiar with the disorder and have not been tested.

“He has a lot of the symptoms I have — a sensitive head, headaches, back of neck swelling. It bugs him, but I guess he doesn’t want to know.

“I cannot drive much farther than Three Rivers. Anyone with Chiari can sleep 14 hours a day, no problem. It’s not depression, your body’s just so tired from fighting constant pain. I can work on the computer or read for about a half-hour at a time, but I have to take two-hour breaks in between. Loud noise and flashing bright lights, I’m always telling my kids to turn the TV or radio down. Piercing noises give me a migraine. I never thought that living in town I’d hear so many (sirens) truck traffic, diesel engines. My daughter can’t ride very far without getting carsick. Zachery sleeps a lot in the vehicle. It’s a major journey for us.”

She has a younger brother and a step-sister. “I was a preemie,” Tonya said. “Neither has been tested. I’m the oldest. My brother’s Mr. Macho. He tells me I’m a wimp. My sister gets headaches, but that’s about all I know.”

Her diagnosis, second stage Chiari, was positive in the sense, “I could say, ‘See, all these years you’ve called me a liar and said I was trying to get attention.’ I’m not. I have something.

“But I totally freaked out and told the neurosurgeon, ‘You’re not cutting my head open.’ Looking back, I should have had the surgery, but I didn’t know enough about it then. Never in a million years did I think my kids would have it or that I would meet other people with it.

“I had friends at the ISD (Lewis Cass Intermediate School District) who deal with kids with all kinds of disabilities and they’d never heard of it. I decided to live with it in denial, and that’s the way it was until my daughter,” who is in eighth grade.

“She has one teacher whose daughter has it. She’s very strong-willed and bound and determined to prove mom wrong that she’s going to have surgery, a straight-A student, FFA member and plays volleyball. I hope she can prove me wrong. Some people get worse, some don’t. Mine’s progressively gotten worse over the years.”

In her own school days, the 1997 Marcellus graduate “played sports up to my freshman year. Then my headaches got bad and I was weak and had dizzy spells a lot. I missed several days because I felt sick or just couldn’t get out of bed, but I graduated on time. Reading is hard because you strain for the smaller words. We moved here Dec. 1, 2006. The best move we ever made. I don’t think people who’ve been in Dowagiac all their lives know what they’ve got until they leave.”

Her faith family has been “supportive,” she said of Saylor’s Keeler Church of God.

“They didn’t know anything about it, but they want to learn and it’s nice to have people to talk to. That’s been great. They’re waiting for the date of Zach’s surgery so they can come up and see him. It makes him feel better that he’s not alone. One of Saylor’s delivery guys is ‘Uncle Dick.’ My son has grown attached to him as a great buddy.”

Her husband, Edward, “doesn’t understand the pain, but he’s always stood by my side and never called me a liar. People die from Chiari. They just don’t wake up from the pressure put on your spinal cord. He hasn’t gotten a good night’s sleep forever because if I’m quiet (and not snoring), he’s wide awake, afraid I’ve quit breathing. He must make 20 rounds a night, checking on me, Zachery and Jordan. He’s afraid of losing one of us. He’s a good person who’s been through a lot, but he shouldn’t have had to go through everything he has.”

Learning Skyler, 9, does not have Chiari proved “one of the happiest days of my life, but yet one of the weirdest,” McKee said. “I was floored because I was sure he had it because he has headaches sometimes. I just wanted to know how bad he had it. I wasn’t in denial anymore.”