September is Chiari Awareness month.  Each day, I am going to share one person’s journey…in their own words.  Chiari malformation is a condition where your brain herniates below the base of your skull, compressing the brain stem and spine.  The symptoms are unbearable, at best, and there is no cure…

Meet Jacob, Liza & Levi...

Jacob is 8.5, his whole life he struggled with severe pain, bladder control issues, balance issues, the lost of symptoms goes on and on. He was FINALLY diagnosed at 5 years old after a freak accident playing with a friend caused him to need a CT. He had his first brain surgery at 6 years old. At 7 he suffered a brain hemorrhage, was diagnosed with Hydro and had 2 brain surgeries all within one week. Jacob has a shunt now and every headache causes our family to be on edge.

Liza had her first life saving surgery at 3 months old. Her chiari diagnosis didn't come until after Jacobs. Her first brain surgery was just 4 months after Jacobs. She was 5. Her second brain surgery also included a spinal fusion, just 4 months after her first brain surgery. Since then Liza has undergone 3 more surgeries, fought a bone infection, had a picc line, a giant blood clot which required months of blood thinners given by injection twice a day. Liza still suffers with sudden onset headaches, but her other symptoms have seen to disappear for the time being.

Levi is 5.5 and has had symptoms since he was about 2. They have just started to fully effect his daily life and so he has been scheduled for brain surgery- we will know the date later this afternoon, we met with the surgeon yesterday.

There is absolutely more to their story, signs, symptoms, the fight for a doctor who knows chiari, insurance fights, the list is ever so long- but we will keep fighting, because my kids are worth the fight. They are funny, smart, talented, and determined to move mountains.


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