In 2013 at age one, a courageous and free-spirited little girl from Arizona named Zion was diagnosed with Chiari Malformation (CM), Type 1 (a brain abnormality that causes the cerebellum, the part of the brain that controls coordination and muscle movement, to cut into the space normally used by the spinal cord, causing pressure on the brain stem and blocking flow of cerebrospinal fluid to the brain).

Nikkita Smith-Dennis, mother of little Zion, did what every mother would do when faced with such a challenge and launched an exhaustive research effort to find the best physician and medical treatment to help her daughter.  After extensive online research and several physician visits, Smith-Dennis focused her attention on Detroit and Holly S. Gilmer, M.D., a nationally-renowned pediatric neurosurgeon at Michigan Head & Spine Institute in Southfield, MI.

“Since her birth in August 2012, Zion’s medical journey began,” stated Nikkita Dennis. “She was not meeting her developmental milestones and in February of 2013 she was diagnosed with Chiari Malformation. I did everything in my power to learn about CM and the effects and challenges it would have on her life and that research led me directly to Dr. Gilmer,” she added.

Dr. Holly Gilmer is the leading expert on CM and only neurosurgeon in Michigan to perform Chiari decompression surgery—a rare procedure involving the removal of part of the skull.

In January 2015, little Zion and her family made their journey from warm Phoenix to wintery Southfield, where she underwent her second and finally a successful decompression surgery for Chiari Malformation performed by Gilmer.

“Of more than 200 patients on whom I have performed decompression surgery for Chiari, 100% have noted they experience less, or none, of their previous symptoms, and we expected the same for Zion,” said Dr. Gilmer, who is one of only five female neurosurgeons in the state of Michigan, and, only one of a very few neurosurgeon in Michigan performing decompression for CM. 

Zion has had to endure two major brain surgeries – and she is not yet three years old.  From the time of her birth to now, Zion has had an incredible amount of medical challenges – already enough for anyone to sustain in a lifetime.

On May 7th, Zion and her family will be back at Michigan Head and Spine Institute for a follow-up visit with Dr. Gilmer. Through her daughter’s journey Nikkita Dennis has become a passionate advocate for CM, raising awareness in their hometown and online with an artistic mural project named “One Face of Many.” Little Zion is the subject of the inaugural mural campaign and the Dennis family is bringing the project to Detroit – building awareness for much needed funds to help other families travel to Michigan so their loved ones can have Chiari Decompression Surgery.

This incredible journey has inspired me to start a nonprofit organization called Zion’s Chiari Children’s Foundation in an effort to build awareness of this medical condition and help provide medical and travel grants for families who want their children to obtain the best medical care, says Dennis.

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Editor’s Note:  Infants may have symptoms from any type of CM and may have difficulty swallowing, irritability when being fed, excessive drooling, a weak cry, gagging or vomiting, arm weakness, a stiff neck, breathing problems, developmental delays, and an inability to gain weight. Adult Symptoms may include: neck pain, balance problems, muscle weakness, numbness or other abnormal feelings in the arms or legs, dizziness, vision problems, difficulty swallowing, ringing or buzzing in the ears, hearing loss, vomiting, insomnia, depression, or headache made worse by coughing or straining. A MRI is the gold standard for diagnosing Chiari Malformation.