Michel'le - Neurofibromatosis

My name is Lay lay,and I am suffering from a condition that I am told is quite rare, I have neurofibromotosis and that caused a tumor to form on my leg,  The tumor is very large now and I believe it may be close to one of the worlds largest neurofibromatomas. I am 28 years old now. When I was around a year old the tumor appeared on my leg and it continued to grow and get larger, when I was five I had a surgery because one of my legs was shorter than the other and then I had additional surgeries in 2003 and 2004 to remove the tumor on my leg, but they were unable to remove the entire tumor so it came back and has continued to grow, getting larger and larger every day. I am 4 foot 7 inches and weigh about 110 lbs, the tumor takes up more than half of my total body weight and weighs around 70 lbs, I was able to get around using a walker up until February this year but since February I have been bed-bound because it has gotten so large. It is so large that I am unable to travel anywhere in a private vehicle, the only way I can get to doctor's appointments or anywhere else for that matter is by ambulance and that is very expensive and I cannot afford to pay for an ambulance.

I have been looking for someone that can help me for years now,  My doctors have now found surgeons in Baton Rouge that say they would be willing to attempt a surgery that would remove my tumor along with my leg but that the surgery will be very long, probably around 24 hours and will take a very large team of medical staff, and right now my chances of surviving that surgery is very, very slim, but I am told that without the surgery I will not survive, so my doctors are trying an experimental medication that they hope will shrink my tumor and its vascular system enough so that they can perform the surgery giving me a better chance of survival. The tumor has a huge vascular system and has started bleeding very badly I don't honestly know if this is because it's gotten so large and it's pulling apart but it is painful and bleeds all the time.

I started taking a new medication a couple of weeks ago.  They told me I will take this medication for 3 months and then they will scan my tumor and send the results to a hospital in Baton Rouge.  I am praying the surgeons are willing to perform the surgery. Without this surgery I have no hope of surviving. I have medical bills already and know that I will have more if this surgery becomes possible, and I will have to be transported by ambulance to Baton Rouge. I have been hesitant to make my situation public as I am a very quiet and private person but I'm hoping that by sharing my story there may be someone out there that can help me. If you are reading this, I hope you are able to help either medically or financially. Please share my story. I am attaching a photograph of the tumor on my leg. Thank you so much and God Bless you.
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Michel'le Chantal 
Mansfield, LA