Thank you for checking out our fundraiser. Jayla is a beautiful 8 year old, she shines everywhere she goes. She also struggles with CSNK2B Neurodevelopmental Syndrome. This syndrome causes her to be intellectually disabled, speech disabled and physically disabled. It is the cause of her epilepsy that affects her memory and ability to function as well as her ability to learn. She is currently in the life-skills program through our school district. Because there is no specialist near us and only one specialist in her very rare genetic syndrome in the US we have to travel. That becomes a struggle not only physically but financially.

She gets care at Penn State Hershey Medical Center but her neurologist is not able to manage her syndrome and has referred her out to the Children’s Hospital of Philadelphia Epilpesy neurogenetics initiative team until the doctor who specializes in her syndrome is able to take her PA Medicaid.

This brings us to the fundraising part, she has an appointment the end of June and in July there will be a CSNK2B conference in New York with other kids like her and their families. In order to afford all the expenses like lodging, food, gas, tolls, parking…etc for her specialized care I have started this go fund me. Even with both her father and I working the cost of making sure she gets the care she needs and deserves is a lot for us to shoulder. I do contract work since it’s the only way to bring in any money and be able to accommodate her needs as well. However when I can’t work I don’t get paid. I am hoping to eventually have a job that has paid family and medical leave and full benefits to be able to help sustain our family and these expenses. Fighting for Paid Family and Medical Leave to be passed in PA and nationally has been part of my contract work because it impacts us so much. We are currently still in the process of getting social security disability for her to help as well but the process is long and taking much longer than we can wait.

Thank you to anyone who helps, anticipating needs for life are hard, and we are grateful for those who help or share.