OTHERS

Brayden’s Battle with CK Syndrome

Rare Disease & Syndrome

Brayden’s Battle

To this day, I still remember looking over at Brayden’s crib and seeing him blue and limp. Brayden’s father and I didn’t think twice before rushing him to the hospital. After running a series of tests, we soon found out that he was having seizures and the ER staff was quick to call in the neurologist and stabilize Brayden. Shortly after being hooked up for an EEG, Brayden at only three months old, was diagnosed with Infantile Spasms Brayden’s doctor and his team came up with a treatment plan and only two weeks in, Brayden started having complications and failed the treatment. Our next option was the ketogenic diet, which then again failed him. Doctors again came up with a new treatment plan, and finally after many months, this treatment plan was working. During this trail period Brayden was diagnosed with a very rare genetic disorder, CK Syndrome. Unfortunately, with CK being as rare as it is, doctors and researchers have very little information. Fortunately, Brayden had his last seizure at the beginning of October 2017. Since then, Brayden has made slow progress, while all 12 services manage and maintain his health very closely.

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