87 - Meet Haylee - Part 1

It is a new month and that means a new feature family. Today we are talking with Kati and Derek, the parents to Haylee, a sassy, smart and determined 3 year old girl from Overland Park, KSHaylee has been diagnosed with RYR-1 or also known as Central Core disease.Derek and Kati tell you more about Haylee’s medical journey, her diagnosis and what this means for her daily life. There is a lot there to unpack and some details that are unique to Haylee. This is part 1 of two episodes of the conversation with Derek and Kati, it begins with talking about Haylee, her personality, her relationship with her brother and then into her diagnosis. But a large part of this episode centers around being and advocate for Haylee and then ultimately for other kids like Haylee. These parents are great examples of advocacy in the hospital, their son is a great example of being an advocate as a child and a sibling, and then they take it a step further by joining a parent board to speak up for additional kiddos on medical journeys. Connect with Derek and Katihttp://www.facebook.com/kkennedy915https://www.instagram.com/kennedy_mama3/Connect with Go Shout Love:https://goshout.lovehttps://www.instagram.com/goshoutlove/https://www.facebook.com/goshoutlove/