First and foremost, we started this website to keep our family and friends updated about how Rafi is doing on a daily basis as she progresses through the stem cell transplant (which you can LEARN about by clicking the Learn About tab above). We moved to Minneapolis from New York City to undergo this promising treatment. Rafi will be the 8th child to take this journey and the 1st one to undergo the new treatment plan. If you click the DAILY UPDATES tab above you’ll be able to read our daily journal. Jackie and/or I will be posting as frequently as possible. Sign the guestbook and send us email, we would love to hear from you as we go through this journey. Plus, and we think most importantly, later in Rafi’s life we want to show her how many people cared about her.

We also feel that it is important to let the EB community know what is happening with every step of the stem cell transplant. We know there are a million questions out there about this promising treatment, dare I say cure. We had them, and we hope to be able to give everyone the information they want and need. We’ll report the good and the bad. We’ll be giving medical information and qualitative commentary to the best of our ability.

It’s our hope that you will look through rafisworld.com to not only see how Rafi is doing, but also to learn about EB and hopefully get you to be involved in creating some awareness for this disease. There is so little institutional knowledge about this affliction and there are no proven cures or even treatments. It’s important to know that its not only the child who suffers. The families are not immune. Trust me when I say there are no good childhood diseases but this one is particularly heinous. There is a tremendous amount of physical pain from this disease, there is an incredible amount of emotional distress that is inflicted upon everyone (just come and experience a bandage change) and a tremendous financial hardship is bestowed upon the family. This is a disease that eventually takes everything away. Many children don’t live to adulthood. The ones that do suffer. We are lucky in many aspects, but others are not as lucky and they need he…