James DeNardo

My son James contracted NF in late June of 2004 after getting cleated in a baseball game. He came home one night from being out with his friends, and I found him laying on the couch screaming that his leg hurt and that he had to crawl in from the car. James is not normally a complainer, and I knew something was radically wrong when I went to lay a paper towel on his leg (on which to put an ice pack) and he began bawling from the pain. We took him to a local emergency care unit, where it turns out, their X-ray machine had broken. Because I asked for a wheelchair (he could not walk), they assumed it was a fracture and sent us to the major hospital in this area. Looking back, I am so thankful for that broken machine, because I'm sure he would have been sent home, causing us to lose precious hours that might have made the outcome quite different. James was admitted that night with a diagnosis of compartmental syndrome. From tests they did, they knew there was excessive pressure in his leg, but figured it was a result of a trauma he had caused sliding into a non-breakaway base during a recent baseball game. Initially, the vascular surgeon was thinking about sending him home, but thought something "smelled fishy" and admitted him. Later that day, his fever spiked high and he went into septic shock. At that point they called in an infectious disease doctor and took him to surgery where his leg was opened from knee to ankle on 2 sides and debrided. At that point, even though our doctor told us that his was the worst thing he had seen in 30 years of surgery, and even though he threw around terms like gas gangrene, my husband and I really didn't realize the graveness of the situation. In a lot of ways, our ignorance was the one thing that allowed us to hold it together during the most emotional and physically trying ordeal we've ever experienced. Two days later, another hot red patch was found on the same leg on his upper thigh. He immediately was taken back to surgery, but thankfully it was cellulitis and not NF. At that point, one side of the lower leg was closed up. James remained in the hospital for 13 long days, which to a 17 year old (and to his parents) was like an eternity. He was given IV antibiotics, a morphine drip and a morphine pump, which sometimes helped and sometimes didn't. Probably the most difficult thing was to watch the expression on his friends faces when they came to visit, as James spent a good deal of his time crying (both in pain and because of the emotional ordeal). It was very difficult for them to watch their normally outgoing, fun-loving friend go through this, and also not know if he was going to lose a leg or worse, not make it. In addition to having one more surgery to close the leg, James went through morphine withdrawal, what we think was post-traumatic stress syndrome, and an allergic reaction to one of the antibiotics he was given intravenously. While this was very stressful for everyone, we realize that he was very lucky, for he survived NF with his leg intact and will have no reason not to live a normal life. James was discharged on July 8th and sent home to do 2 weeks of IV antibiotics, followed by another month of oral antibiotics. I am thrilled to report that aside from a few large scars on his leg, he is back to normal and we actually dropped him off at college last week. The doctors have told us that there is no reason that he cannot continue to play baseball in college and resume the normal life of a now 18 year old. We know we are very blessed, and are truly indebted to our brilliant doctors, Bruce Fellows and John Rheinhart, as well as the extraordinary care given by the staff at Christiana Hospital in Delaware. Additionally, I know in my heart that the many people that prayed for my son during his illness certainly made the difference in his ultimate outcome. Even now, two months later, I get a rush of emotion when I think about what could have been and how very, very blessed we are to have James with us. My heart goes out to all of those who have made it and to the families of those not so fortunate. NF is an awful disease that moves quickly and furiously. I hope that through the efforts of the NNFF and other grassroots efforts by survivors and their families, we can help bring more attention to the disease and keep others from going through the emotional and physical pain that so many of us have experienced.