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Our Baby Is Not Defined By Epilepsy & Cerebral Palsy

We Finally Found A Diagnosis: Epilepsy & Cerebral Palsy

Our sweet Josie girl was born almost eleven months ago, and she has taught our family a lifetime of lessons already. Within hours of birth, Josie began having seizures. Watching our tiny baby seize over and over again while medications failed and doctors were left without answers was the most difficult time of our lives.

When we finally did get an answer, it did not come with any comfort. Josie has a mutation on the KCNT1 gene, which causes a very rare and severe form of epilepsy. There is no specific treatment, no cure. The few medical reports out there warn of other health issues, profound developmental delay, and a shortened life expectancy. Cerebral Palsy and Neurological Vision Impairment are also battles our daughter has to face.