Join us as we raise awareness and funds this June to Move CDKL5 Forward! Help us reach our fundraising goal!

Our daughter Ebba was diagnosed with CDKL5 deficiency disorder after she experienced seizures in her first weeks of life. A spontaneous mutation occurred on her CDKL5 gene shortly after conception, and this completely random mutation means she is deficient in a protein that is necessary for a normal neurodevelopment . Having CDKL5 deficiency disorder impacts nearly every aspect of her development. Ebba battles through seizures nearly EVERY day, and she has significant vision impairment and low muscle tone, which makes it very difficult for her to meet developmental milestones.

Despite all the challenges against her, Ebba fights hard everyday to learn and grow. Each day we are amazed at her strength and determination. She has brought such love and growth to our family, and a newfound appreciation for how special and fragile life is.

CDKL5 is tough. Many days we feel like we are in a never ending nightmare. Watching your child battle through seizures is a helpless, horrific experience that doesn’t really get easier with time. Children with this disorder deserve better treatments and a cure. The IFCR is working hard to move CDKL5 forwards so that research on this devastating disorder progresses and viable treatments and better outcomes are available for everyone fighting this disorder.

Our family will be walking on June 18th at 2pm in Bowering Park to move CDKL5 forwards. Please consider making a donation to the IFCR so that the important work and research on CDKL5 continues. And if you want to join us in the park we would love your support!

Kindest Regards,

The Coombs Family