The story of Michelle
Jordan, my 7 year old son was diagnosed with dfsp (dermatofibrosarcoma protuberans), a rare form of cancer. The only treatment for him was surgery. He has had two surgeries to date and frequent check ups. The hard thing about having a rare disease is trying to find a doctor who knows about it and how to treat it. As patients of rare diseases (or family members of patients), we are our own advocates and we have to do the research ourselves. It is nice too if you can find others who will share their similar stories like we have found in our dfsp Facebook group. Jordan is doing well. I told him that being brave doesn’t mean you are aren’t scared, it means doing what you have to even if you are scared. Thoughts and prayers to all of you RARE jewels.