Austin is an adolescent boy who was diagnosed with Aggressive Juvenile Fibromatosis on April 1, 2006, when he was in 4th grade. It began with Austin feeling pain in his leg and after being seen by the doctor they discovered that his leg was swollen. After an MRI was completed they were sent to the Children’s Hospital of Philadelphia (CHOP) where he was treated for this rare disease. Since 2006, Austin has had three surgeries, two of which removed large tumors that were approximately six pounds each. After each surgery it would take several months for Austin to get back to walking and having more strength in his leg with the help of intensive physical therapy and continuous chemotherapy.
Fibromatosis, including Desmoid tumors, is a group of benign (noncancerous) soft tissue tumors. Most common are Desmoid tumors, a defined, firm, rubbery mass, much like scar tissue. The tumors usually occur in young adults, either in the arms and legs or the trunk. Sometimes they appear in the abdomen or thorax (rib cage) as well. Although Desmoid tumors are noncancerous, they can be difficult to remove because they intertwine with the tissues and organs around them. It is not always possible for surgeons to locate the boundaries of the tumor when they are removing it. This makes the rate of tumor recurrence as high as 70 percent. However, surgical removal of the tumors remains the optimal therapy. Radiation therapy and chemotherapy are sometimes utilized for the treatment of these tumors. Sometimes both surgery and radiation are used. When chemotherapy is used, the drugs are given in low does. There are few short-term side effects and very little long term side effects.
Above is a picture of Austin donating the inital $25,000 to begin Austin’s research fund with The Children’s Hospital of Philadelphia.
How You Can Help
Help Austin find a cure for Aggressive Juvenile Fibromatosis. Do your part to make a difference, participate in events or donate monetary items. Help Austin continue to raise funds for research to find a cure for Fibromatosis. Help Austin to make a difference not only in his life but the other children that are fighting this disease or will fight this disease in the future. Together we can all make a difference.