The symptoms can be very vague: things like dizziness, headaches and trouble swallowing. The diagnosis, once it's finally made can be pretty scary. We're talking about something called Chiari Malformation. It's when the part of the brain called the cerebellum doesn't sit where it should in the back of the skull.
We had a chance to meet some Chiari patients this week, including a blonde-haired 2-year-old from Whitehouse named Cage. He looks like any other happy, healthy little boy, but appearances can be deceiving. Cage one of an estimated 300,000 Americans with Chiari Malformation.
Cage's mother took him to his previous doctor, concerned about weakness and clumsiness and says the doctor thought she was over-reacting.
"She felt that his legs were just not quite as strong as they should be and that his balance was not quite as good as it should be," says Pediatrician Dr. R.W. Mills. "And sure enough, she was right."
Cage, like many Chiari Malformation patients, had surgery to open up the base of his skull and avoid compression.
"The cerebellum should be above that opening and in Chiari it actually gets pushed down into the opening and then sometimes even more of the brain stem itself gets crowded into that opening," says Dr. Mills.
Kellie Haupricht of Delta struggles with headaches, dizziness and other symptoms. She says she was mis-diagnosed her whole life, until her son Nathan was diagnosed with Chiari Malformation. She says Nathan's had nine surgeries within three years, and she tears up remembering there were times they weren't sure if he would survive.
"He has his good days and his bad days," says Kellie. "But right now, we've been without surgery for him for going on 3 years now, so its been... as good as we can ever ask for."
Nathan says he loves video games and is even writing a book right now. Still, you can hear it in his voice that he really wishes he could play football.
"I'm told that if I'm playing football I have a chance of being fully paralyzed I believe or even die," he says.
Nathan, Kellie, and little Cage are facing uncertainty and potentially years of doctors appointments and surgeries.
"Research is very limited right now and so that's why we're trying to get the word out we need awareness," says Kellie.
There are several upcoming fund raisers and awareness events as part of an effort called Conquer Chiari.
August 2nd at Abuelo's 3415 Briarfield, Maumee, Oh, 20% of food sales from 3pm till 9pm will be donated directly to Conquer Chiari.
August 4th at Toledo Harley Davidson, Motorcycle run to benefit Conquer Chiari, food, auction and entertainment.
September 22nd at Monclova Primary School, Monclova Rd, Monclova, Ohio. CCWAA Conquer Chiari Walk Across America Registration starts at 9am and Walk starts at 11am. 5K walk/run/roll food, entertainment, Chinese auction. Needed donations for much needed research and gift baskets for Chinese auction. Please pre register at comquerchiari.org.
For more information on any of the events please contact. Jill @ 419-822-8522 or Kellie @ 419-822-6049
November 17th, Texas Hold Em Tournament at Wauseon American Legion, Shoop Ave., Wauseon, Ohio Poker tournament in morning till aprox 4pm then at 5pm a Spaghetti Dinner Benefit Open to the Public DJ, 50/50's, fun for all. Please contact Ed @ 419-906-7445 or Bill @ 567-213-1231
March 16th, 2013 Texas Hold Em Tournament at Wauseon American Legion, Shoop Ave., Wauseon, Ohio Open to Public Please contact "Ed @ 419-906-7445 or Bill @ 567-213-1231
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