Evie Johnson was born in Dallas, Texas, on November 20th 1990. Under most circumstances this first sentence would suggest the beginning of a normal life for a child who is loved and full of hopes and dreams but this was not the case. Soon after Evie’s birth she was rushed to the hospital because of an inability to breathe. This was the beginning of a long strenuous battle for Evie and her family. First she was diagnosed with severe reflex, then Atypical Rhett syndrome, and so on. After numerous hospital visits, hundreds of tests, and plenty of medication, Evie, now 22, was final diagnosed with CDKL5.
Evie has overcame numerous battles such as the ability to walk and continues to grow in more ways than one. All though Evie has been a beautiful to everyone who she crosses paths with, there is still a deep sorrow in knowing that there are countless cases which will remain undiagnosed because of the lack of CDKL5 knowledge.