When a parent or caretaker receives a life-limiting diagnosis, we know firsthand how overwhelming the experience is. Shock, anger, denial, and grief are all very common responses to learning that your child has a medical condition that will likely take their lives before adulthood. But there is always hope of a medical breakthrough or treatment that may save your child’s life or, at the very least, give your child more time.
You get thrust into a world where you will spend hours on the internet searching for information, where doctor and therapy visits take over your calendar, and where medical supply companies and insurance providers end up on your phone’s speed dial. It is incredibly daunting at first, especially when you are researching a disease for which there are very few published details.
We hope that as soon as you get your diagnosis, you contact us at the Little Miss Hannah Foundation and let us help you sort it all out. You will be assigned a parent advocate who will be able to help you locate reliable information on the disease process, support groups, financial assistance, possible clinical trials, and other items that can help make your life more manageable as you delve into this new lifestyle.
We currently serve the Las Vegas and Southern Nevada areas. For Southern Nevada residents, please click here to register.