ILY to Infinity - Chiari Malformation Awareness

Ily (eye-lee) is a 3 year old double brain surgery survivor.

On June 26, 2015, at the age of 2, Ily was diagnosed with Chiari 1.5 Malformation and underwent her first decompression brain surgery with duraplasty and C1 laminectomy on July 31, 2015. She then had another (emergency) brain surgery on August 7, 2015.

Before my daughter was diagnosed, I had never heard of Chiari Malformation. Ily is Epileptic so I knew a little bit about the brain, but not much.

Ily suffered from horrible headaches that I thought were related to her Epilepsy but I couldn't be sure and it didn't seem like any doctors were sure either. I refused to stop until someone could make sense of it. At that point her neurologist (probablybecause she was tired of me being in her office) suggested having a MRI of Ily's brain done. I was reluctant at first because this test would require full sedation and Ily was so small. I prayed hard but when it was all said and done, I knew that we needed to do the test in order to get to the bottom of these headaches.

On June 24, 2015 Ily had her first MRI of the brain done. My world came to a screeching halt when I received the devastating news two days later. I will never forget hearing her neurologist tell me that my daughter's brain was falling out of her skull. We were immediately referred to a neurosurgeon.

The neurosurgeon ordered multiple tests on Ily. We quickly learned that Ily was very symptomatic. The symptoms were never anything that I paid much attention to because she was so young and they are very vague.

There were times Ily was unable to swallow. I thought this was just her personality. I thought it was cute she hoarded her food like a little chipmunk. She had no bladder/bowel control but I just told myself she would be a later potty trainer and I never worried too much about it. Ily was very clumsy but what 2 year old isn't?

The tests showed that Chiari was the cause of all of those "symptoms" - I felt like a horrible mother. She failed a swallow study because her brain was unable to send messages to tell her to swallow. She was diagnosed with central sleep apnea after a sleep study that revealed her brain would cause her to stop breathing during her sleep. She had multiple MRI's that revealed Chiari was affecting her entire spine because of the gated flow of cerebral spinal fluid and there was a small Syrinx (tumor) growing in her spine. And finally, her headaches were confirmed to be Chiari headaches.

Most people do not find out they have Chiari until later in life, and sometimes it's too late. In Ily's case, had we not had the baseline MRI for epilepsy, we would have found out by her waking up one day being completely paralyzed because of a Syrix forming in her spine.

Chiari Malformation is more common than you think and chances are you or someone you know has been directly affected by it.

There is NO CURE for Chiari Malformation and Ily will have to be followed by neurosurgery for the rest of her life. There's also a chance she will have to have more brain surgeries in the future.

Chiari is a congenital defect (you're born with it) and it has changed our lives forever. I promised my daughter after her first brain surgery that I would do my best to raise awareness and help other families.

If you cannot donate, that's okay. Just help me spread the word about Chiari Malformation, you could save a life!

I also iite you and your family to join Ily's team and walk/run with us on September 17, 2016 in Carrollton, Texas! We will have team shirts made so stay tuned on how to order!

Thank you for taking the time to read Ily's story - in just the couple of minutes it took to read this, you helped me keep my promise to raise awareness!

-Brittany Mease (Ily's mom)