Millie Lynn our 1 in a Million and her fight with POBINDS

Hello, I am trying to raise money for my daughter Millie. She started having seizures at 8 months old , and was diagnosed with a very rare genetic mutation causing something called POBINDS syndrome there are only about 81 reported cases in the world. There is limited research at the moment. She has refractory epilepsy and delays due to her condition, and she could experience other difficulties. Just recently she was diagnosed with an atrial septal defect which is a very large hole in the top portion of her heart. She will possibly need surgery for this in 6 months. She has just recently started needing revival when seizures happen. She has needed to be revived 5 times over the last 5 months. I am raising money to help with gas, food, and any other needs she or myself might need while being in and out of the hospital and seeing specialists (in and out of state). Since her diagnosis, I have decided to quit working to be home with her. We have also lost our only means of transportation until we can pay for this to me fixed. I also have 3 other children so things are very snug at the moment. Anything would help and be much appreciated. If you cannot help, kind words and prayers are always accepted