CDKL5 Deficiency Disorder is a rare disease that affects approximately 1 in every 60,000 live births. The chance of being impacted by this disease is very small... having 2 families in the same town facing the same disease; almost unheard of.  Josephine, "Jo", and Skylar both live in Grafton, Massachusetts. It was through our early intervention teams that our families were connected on what will be a lifelong journey together.   

Jo and Skylar both began having seizures as young infants. Seizures associated with CDKL5 often prove very difficult to control and unfortunately there is a lot of trial and error done to see what works best for each individual case. There is no cure. Both Jo and Skylar spent much of their first year of life in and out of the hospital. They  have been on multiple anti epileptic drugs (AEDs) as well as the ketogenic diet to try and control their seizures. In addition to seizures, both girls face significant impairments across other domains including cognitive, gross motor, fine motor, speech, and vision.  

Although Jo and Skylar present differently, their stories are almost identical. When you hear the words "your child will likely never walk, talk, eat orally, etc." you feel very defeated and alone. CDKL5 has ultimately created a lifelong friendship not only for us as parents, but also for Jordyn and Betty, Skylar and Jo's big sisters. They have learned compassion, acceptance, and unconditional love at such a young age. Jo and Skylar have taught us all so much. We find so much joy in things that other families may take for granted such as the smiles, giggles, snuggles, and new skills that are attained.  Both girls are writing their own stories and make us so proud. 

Join us as we raise awareness and funds this June as we work to Move CDKL5 Forward for the 2nd year in a row! We are forever grateful for your support as we aim to reach our fundraising goal! All funds raised go to the International Foundation for CDKL5 Resarch (IFCR), which is a 501(c)(3) nonprofit organization that funds scientific research with the hope for better treatments and ultimately a cure for CDKL5. 

This year we are hosting a fundraising event on June 18th from 1-4pm at Grafton High School! You can RSVP through our facebook event page or reach out to us directly.