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Wednesday, July 24, 2019

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Foundation hopes to bring awareness to little-known disorder

Foundation hopes to bring awareness to little-known disorder

Brooke Detillier

Chiari, pronounced (kee-AR-ee), a name not many people aare familiar with, sounds like a nice brand of wine. But to Brooke Detillier, a freshman at South Lafourche High School, it’s anything but.

Brooke, the daughter of Mark Detillier, Jr. and Kelli Castagnetta, was diagnosed with Chiari Malformation last summer.

Chiari Malformation is a serious neurological disorder where the lower part of the brain, the cerebellum (which controls balance and coordination), descends into the spinal canal.

Since the skull is not big enough, the tips of the cerebellum, called the cerebellar tonsils, are pushed down through the foramen magnum, the bottom part of the skull where the brain attaches to the spinal cord. The tonsils obstruct the normal flow of cerebral fluid, (which surrounds and protects the brain and spinal cord), and the resulting pressure on both the brain and the spine causes many symptoms.

If not treated, it could easily lead to paralysis.

Some symptoms of Chiari are headaches, (made worse by coughing, sneezing or straining), neck pain, difficulty sleeping, muscle weakness, numbness, unsteady walking, poor hand coordination, slurred speech and blurred vision.

Brooke, who will turn 15 on Feb. 26, was scheduled for surgery immediately after being diagnosed last July and was able to start high school with the rest of her class.

Since then, Brooke and her family have formed a foundation, the Brooke Detillier Chiari Malformation Foundation (BDCMF), a 501c (3) nonprofit Public Benefit Organization, to help bring awareness and research to this serious neurological disorder.

In most cases, people with Chiari malformation get misdiagnosed simply because the medical professionals are not familiar with Chiari at all.

The long-term vision of the foundation is to help others that have not been able to afford the appropriate care for this condition.

A fundraising / awareness event is scheduled for the children of the community on Saturday, April 5 at the Community Bible Church from 8 to 4. Pictures will be available with the Easter Bunny, arts and crafts will be available for the kids, along with face painting, concessions plus a craft fair for the adults.

The craft fair will include vendors from Mary Kay, Velata, Premier Jewelry, Grangies Gifts, Gold Canyon Candles, Origami Owl in a pickle, Cajun Bella Boutique, Paws for Thought Pet Boutique, Jewelry in Candles, Plexus, keychain jewelry, bows and bow boards, Tutus, dog tag jewelry, Younique, Purple Penguin Art Company, Nerium, Tupperware, Easter gifts and more.

Please come out and support this cause and your local vendors. Tickets are $20 for VIP admission and $12 for general admission and can be purchased at Frank’s SuperValu in Larose, Merle Norman of Larose and B & B Hardware.

The monies raised from this event will stay in our area to help people who have been burdened with the medical cost and care after being diagnosed with Chiari Malformation, a disorder that ranks fifth out of the ten strangest medical conditions you’ve never heard of (