The story of Stephanie
When Kaela was in utero, we found out Kaela had an abnormality of the brain. Kaela has Agenisis of the Corpus Collosum, the part of the brain that connects both sides did not develop. It wasn’t until right before she turned 4 months old that Kaela began to have seizures. We would come to find out later that onset seizures around this age is very common. Kaela was seen by many specialists, but it was her Opthothalmologist that was able to see that Kaela had lucanae in her eyes. This makes it so that her vision is like Swiss cheese – she can’t see the full picture as there are holes in it. Put these 3 factors together and you get Aicardi syndrome. 12 years ago, we were told Aicardi Syndrome only affects girls (there is 1 known case of a male), there are only 500 worldwide with this diagnosis, life expectancy is 10 years, seizures will most likely never be under control. In 2019, there are over 1000 cases worldwide and working very hard along with the Aicardi Foundation to bring awareness to this rare disease.