My daughter was born October 2, 2016. A beautiful baby girl who is completely healthy and “normal”. However, what lurked beneath the facade of a healthy and perfect baby girl was CDKL5 Deficiency Disorder and it reared its ugly head 27 days later on October 29th, 2016. We had a hard road of over 15 different neurologists telling us it wasn’t genetic, but we persevered and found the diagnosis 6 months later and have been rocking the “inchstones” ever since. While I wouldn’t ever wish this disorder on anyone, I have grown to love the people I have been so blessed to connect with because of it. Through the timeline of 9 years now, I have been grateful for the support and community I’ve found through IFCR, and I have served as a family support representative for Florida and similar parents in similar situations as mine. I feel God has put me in this position to hopefully be a light to those struggling to find hope in the dark hours of this disorder. I know it gets very hard sometimes, but we strive to stay positive and search out the positive experiences and reasons why we are going through this life with CDKL5.

I am a wife to a wonderful man who supports our family not only financially, but emotionally and spiritually. I am also a mother of four, ages 19, 16, 9, and 7. We homeschool, and I am the full-time mom, teacher, and caregiver. I have an A.S. in early childhood education and truly just find joy in the little things in life.

I am honored to be a member of the board for IFCR and am looking forward to serving this community in a deeper way and giving back to the organization that has supported my family. I hope to shine light in your life today and be an ear or voice where needed.