Lucy's Light is raising funds for the STXBP1 Foundation, a 501(c)3 non-profit that is dedicated to creating awareness and finding a cure for STXBP1 disorders.

Lucy was born in August 2021 in Dallas Texas. She?s our miracle, conceived through IVF after a battle with infertility. When she arrived we felt the greatest love we?d ever known, and almost as quickly, the most fear when she had a seizure the first time I held her. We didn?t even know what we were seeing until we insisted she be taken to the NICU the following day after witnessing more seizures. Her first of many EEGs was done within her first 48 hours of life, it confirmed she was having seizures and was put on medication. 

Since then she has had necrotizing enterocolitis, feeding issues and developmental delays. She was in and out of the hospital frequently for her first 6 months and during her first long hospital stay she was diagnosed with STXBP1. We were encouraged to finally have an answer for what was happening to our baby girl but so scared when we learned how rare it is and that there is no treatment currently. 

We are so grateful that she has now been seizure free for over a year. We know they could come back at any time so we count every day out of the hospital and seizure free as a blessing. Lucy is our shining little light. She?s an incredibly brave, sweet girl with sparkling eyes that always look with curiosity. She has been through more than most people have in their whole lives in just a year and a half yet somehow she still wakes up everyday with a big smile and giggles. She inspires us every day to work harder, learn more and appreciate everything. When life is hard, you cherish the smallest moments of beauty. 

Since she was about 5 weeks old we have been working hard in therapy and she is now in Physical, Speech and Occupational therapy multiple times a week to encourage development in all areas. She is working on eating solids with texture, sitting independently and fine motor skills. We are looking forward to working with communication devices in the near future because we know communication is one of the hardest struggles for most people with STXBP1. 

We have a long road ahead of us but our love for our sweet Lucy bug carries us through it all. We are so proud of the strong community of STXBP1 families and learn so much from them. We are all in this fight together and our biggest battle is raising awareness of this rare disorder, and gathering funds for researching new treatments to help our babies. 

New potential treatments are on the horizon, there is hope and we can move forward with help. Every purchase and donation no matter how small makes a difference to STXBP1 families like mine.