June is CDKL5 Awareness Month, and for our 3rd year in a row we will be working to Move CDKL5 Forward! Join me as I raise awareness and funds for this cause that is extremely close to our hearts.

Many of you already know our story, but this time of year gives us a chance to share it again. Our sweet, resilient, sassy, slightly mischievous, little girl Skylar was diagnosed with CDKL5 Deficiency Disorder at just 4 months old. This diagnosis came after an extremely difficult first few months of life for Skylar (and us as a family). As Skylar's parents, Allan and I knew something was not right at just 2 weeks old. She was very jittery as a newborn, and things progressed quickly.  Our first trip to the emergency room was when Skylar was just 2 months old. This 5 day stay resulted in the confirmed diagnosis of epilepsy, but after many procedures including labwork, brain MRI, EEG, spinal taps, etc. we left feeling defeated as we had no answer as to what was causing SO many seizures that were not responding to medication. At the same time though, we also felt hopeful that we would receive results from labwork that would be indicative of Skylar eventually outgrowing her seizures. We had absolutely no idea of what would lie ahead. 

The day we received Skylar's life changing diagnosis is a day we will never forget. To be told that your infant daughter will likely never walk, never talk, never eat orally, etc. is something I do not think any parent can be prepared for. We immediately enrolled in early intervention and learned early on to celebrate everything that Skylar CAN do! Fast forward more than 3 years, and Skylar is totally thriving! It has been a roller coaster of a ride, but Skylar continues to defy many of the odds that have been against her. She is on the verge of running, and uses this to keep up with her big sister, Jordyn! They are each others biggest fan! We are extremely grateful that we currently have seizures under control, although we know that the harsh reality is this can change at any time. Skylar's biggest struggle at this point is her communication, and frustration with this can often lead to challengiing behaviors. She tries SO hard to get her point across and utilizes augmentative communication as well. 

Please join our team this month as we continue to raise awareness and fundraise for the IFCR, which has been a huge part of our lives. Every dollar raised helps us get closer to a cure and better treatments. If you are not able to make a monetary donation, you can still be involved and help our cause! Track every mile you MOVE in June, whether it is walking, running, biking, wheeling, swimming, etc. This can be added onto our fundraising page which will help us reach the total goal of 18,000 miles moved across our community! 

We are forever grateful for the support!! It is truly unbelievable how much the IFCR has accomplished in the last few years, and it could not have been done without the support of friends and family of our entire community. THANK YOU!!

If you would like to order one of event our shirts, click on the link below! 

T-Shirt | Zazzle