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Give Charlie a Chance
Updated: Wednesday, October 2 2013, 08:44 AM EDT
Walton, Ky (Liz Bonis) -- Catie who's now five and Charlotte, who goes by Charlie, were both born with a genetic condition called CDKL-5. Says Catie's mother, "it's so rare that it's named after the gene that is mutated."
The girls met three years ago and right away both families noticed some amazing things about these little girls, "these children we all believe are angels, gifts that have been given to us, and anyone that meets them, all of them, all of them experience that love right away. So it's a gift, it's fantastic."
The families got together because Charlie's parents Amanda and Chris Nicholson started an organization called Give Charlie a Chance. It raises money through special events throughout the year and through a website, which helps others learn more about CDKL-5, "not only are you giving charlie a chance but all the other little kids that are affected with this disorder."
The families who have children who are living with this condition are making a difference in the lives of others. Not only do they get together to support each other regularly, but they are raising awareness and money for research. Someday they do believe that we will have a cure, "we're getting closer, they have a mouse model already and the mouse model is so much like CDKL5, these children clap their hands a lot, and the mouse can clap it's hands".
Amy and Mike Castellini say the symptoms in this CDKL5 are different in each child but many suffer from regular seizures, and often that's the toughest part.
They are quite an inspiration, their gift of a happy disposition is angelic, "I do think that they are special gifts".
It kind of reminds you of the saying; angels fly because they take themselves lightly .
Click here for more information about the disorder and research.