Blog

CDKL5 Spotlight on Brooklynn!

Spotlight on Brooklynn! Mom, Ashley, shares about her sweet daughter. Brooklynn is 3.5 years old and lives in San Diego, CA with her family. She began having seizures at 2-months-old and received her Cdkl5 Deficiency Disorder (CDD) diagnosis at 9-months-old. Along with CDD, Brooklynn also…

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CDKL5 Spotlight on Bennett!

Meet 2-year-old Bennett! He lives with his mom, Kara, dad, and 4-year-old brother, Parker, in California. Bennett’s noticeable Tonic Seizures started at 7 ½ months old, although he may have been having Infantile Spasms long before that. Once his seizures started, we got genetic testing…

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CDKL5 Spotlight on G!

Time for another spotlight! Mom and super supporter, Marissa, tells us about her amazing son, G, and how they support the IFCR! Our son, G, was diagnosed with CDKL5 Deficiency Disorder at six months old. Our neurologist recommended genetic testing after we failed to find…

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CDKL5 Spotlight on Miss Sonzee!

Time for a CDKL5 child Spotlight! Everyone meet Miss Sonzee! Thank you to Mama, Randi Zaila, for sharing about your brave little beauty! Sonzee was diagnosed on April 16, 2015 when she was only 64 days old and is one of the youngest to be…

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CDKL5 Spotlight on Ryan!

It’s time for our next CDKL5 spotlight—meet Ryan! Many thanks to Ryan’s mom Megan for taking the time to answer our questions, they are worth the read! What sort of therapies has Ryan done? Ryan started with physical therapy around his first birthday, and since…

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Caregivers of Children

One thing that we at the International Foundation of CDKL5 Research are the proudest of is the fact that parents and caregivers of CDKL5 children created the organization. We understand that each child, situation, and family is different; but we have a great sense of…

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November is National Epilepsy Awareness Month

November is National Epilepsy awareness month, and many CDKL5 families have strong relationships with epilepsy. Many received inaccurate diagnoses of epilepsy before the correct one of a CDKL5 disorder. The more people that can recognize epilepsy, the more will be able to recognize CDKL5— we’re…

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Disability Discrimination

Having a child with special abilities brings unique joys and struggles; especially when the said child doesn’t speak and is wheelchair bound which is the case for a lot of our CDKL5 families. We want you to have as many resources as possible. If your…

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Recent CDKL5 diagnosis? – We are here to help!

In an informal poll taken on our Facebook page, some of our IFCR parents spoke up about their first questions upon receiving the CDKL5 diagnosis and any words of comfort, advice, or wisdom that they found helpful. Here is what they answered in order of…

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