I am a mother of a 14 year older who has sickle cell HbSS. One of the guides I read that has helped me make the best decisions for my daughter was Hope and Destiny: A Patient's and Parent's Guide to Sickle Cell Anemia. The book gives an excellent foundation for prevention and what you can expect. Finding a healthcare team that you can trust is the most important in the early years. Next, go to appointments on time and regularly. Some other things I do for my daughter that help are keeping her well-hydrated, avoiding freezing and hot temperatures, and eating healthy fresh fruits and vegetables.